My Daughter Had a Brain AVM: Advocacy, Medical Trauma, and Hope

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One morning, a four-year-old named
Adelaide woke up and told her mom Tilly
that

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her head was hurting. And at first to
Tilly,

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it didn't seem like anything too
extraordinary.

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She was just getting ready for
kindergarten,

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talking about what she was going to wear
and being completely herself.

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And then just minutes later, Tilly found
her daughter upstairs holding her head,

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screaming, sweating, and unable to find
her words.

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Within hours, Adelaide was in the
hospital.

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And a CT scan showed bleeding in her
brain.

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I'm Katie Taylor, a certified childlife
specialist,

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and this is Inside the Children's
Hospital,

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where we talk with parents about what they
lived,

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what they learned, and what they want
other families to know

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who are navigating similar situations.

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Today, Tilly shares what happened when
that completely normal morning turned into

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a very different kind of morning,

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which was an ambulance ride, a transfer,

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neurosurgery,

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and decisions she and her husband had to
make before they even had time

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to fully process what was happening.

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But what stayed with me during my
conversation with Tilly was what came
after.

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We talked about a child who needs to feel
safe in healthcare again

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and giving kids back some control after
medical trauma and what it looks like

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to keep asking questions when as a parent
you feel like there are pieces

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of a story that just don't quite add up.

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And even if your child's medical
experience looks different

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or nothing like Adelaide's, I think
there's so much here about listening

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to your child, advocating thoughtfully,

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and learning how to trust what you're
noticing without letting fear make every

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decision for you. Here's my conversation
with Telly.

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I think it's so important for us to
understand the whole purpose of this
podcast,

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which is connecting parents to other
parents.

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And there's this part of like motherhood
that is like who we were before

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we became moms and then…

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Caregiver moms or healthcare advocate moms
is like a whole other level.

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So tell us a little bit about you,

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Tilly, before becoming a mom and starting
your family.

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Yeah, sure. ~ Okay, so yeah, I'm Matilda,

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~ but everyone calls me Tilly.

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~ And before I became a mom,

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~ I would say I was like an adventure
seeker.

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I still very much am that now,

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but I guess like just less like baggage.

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~ But I've always been in the marketing
industry agency side.

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I ~ moved into like tech.

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world and I love my job. work in marketing
content now,

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what we would call like go to market,

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working with like high performing tech
sales teams.

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And I think like the like strongest trait
that I would probably say that

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I possess is this like need to ~ move
around.

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And my husband is very much the same.

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So I met him in Sydney, where my mum is
from.

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And we met and

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we just had very similar values when it
came to traveling and exploring.

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And so we've always just followed
opportunities.

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And so that led us from Sydney to
Singapore,

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Singapore to Austin, Texas, and then most
recently New York.

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So no rhyme, reason or structure.

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And everyone asks us constantly,

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like, so what's the plan next?

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And before kids, even then, it was like,

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we just follow wherever the opportunity
lies.

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And so, yeah, I would say that that's
probably who I...

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was before Mother and I'm still trying to
invoke that as much as I possibly

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can but yeah I love socializing community
is my absolute like ride

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or die ~ mentality whenever possible ~ and
being like on the road

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a lot and meeting new people is ~ awesome
and luckily we can kind

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of just like collect these people along
the way and just like really build

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a vibrant global community.

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I love that. You know, it's one of the
things I didn't anticipate

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in starting a podcast is like the
beautiful community that I'm building with
people

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I've never actually physically met,

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but feel so

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Yeah.

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connected to. ~ It's one of my favorite
parts too.

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Well, Matilda, why don't you kind of talk
about your journey into parenthood

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and what happened when you find out that
your daughter was going through something.

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I know a little bit of your story just
ahead of time.

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And yeah, I can imagine it was incredibly
shocking and upsetting to go through that.

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Yeah,

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~ pretty standard introduction to
parenting.

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I mean, outside of the fact that it was in
the middle of COVID,

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but we were, my husband and I moved to
Texas from Singapore with this intention
of,

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we had just got married and we thought
that Texas would be a great place

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to start a family, which it absolutely
was.

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It was the perfect place. We had Adelaide
who

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is five now and ~ pretty straightforward,

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birth, mean outside, mean, various
complications that weren't serious,

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ended up having a C-section, for example.

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And the only challenging part of having
Adelaide

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was probably honestly just being so far
away from home.

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We knew that that was always going to be
the case living abroad,

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but I think the hurdle then came COVID and
not having family

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be able to join us and

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you know, they hadn't seen us since the
wedding and then I got pregnant

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and you know, I was like, no one's going
to see me pregnant.

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Now I look back and think like,

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God, I can't believe I even cared about
that.

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at the time it felt really significant.

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And then, yeah, when she was born,

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we had no way of getting people in and we
were,

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we were visa holders. And so it was very,

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it was really, everyone was very unsure if
we could even leave and come back.

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So we were sort of tied to Texas.

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And I would say that

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from a circumstantial perspective and
just,

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think, a natural hormonal perspective,

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I suffered pretty deep postpartum
depression,

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which I sort of refused to believe for a
long time.

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And it wasn't until my pediatrician
actually was the one that was flying

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the flag very early. And my OB-GYN had
been identifying it a lot.

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Both of them would...

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talking to a brick wall for a while,

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I think. And then eventually when Adelaide
was nine months,

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I decided to like seek help. ~ And it was
like a weight lifted off my shoulders.

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I ended up going on medication and have
like consistently been

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on that medication for my second
pregnancy,

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which ~ just wildly changed the
experience.

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And so I would say that like it ~ was a
tough entry to motherhood,

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feeling isolated, but... ~

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In general, I never felt completely out of
my depth.

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I think I just felt this level of like
consistent,

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like hopelessness. It was a strange
feeling where I just couldn't necessarily

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put my finger on it. I was like,

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I don't not love my child. I don't not
want to take care of her,

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but there just was this flatness to my
world that I couldn't work out.

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And I was looking around me at all these
mothers just saying,

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isn't this just the most magical thing in
the world?

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And

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I wasn't feeling it. And to be fair,

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my personality type is still, I wouldn't
say the most like,

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~ this is the most magical thing I was
born to do this.

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I fully believed that that was my path in
life.

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My mom is one of eight children.

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She is a mother of five. She is like this
fantastic role model.

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And I couldn't understand how it just
wasn't something I thought I was built

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to have thousands of children.

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And yeah, it just was not my path at all.

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~ So that kind of like was like the
beginning.

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And when Adelaide turned four,

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my husband got an opportunity to move our
family to New York.

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And we'd been in Texas for seven years at
that point.

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You know, we bought a home there and we
were loving it.

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It wasn't really something that we were
like,

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we really need to leave. We sort of had.

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suspected that the next move for us as a
family was likely going to

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be moving back to Australia to be with
family as Adelaide was getting closer

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to elementary school. But then this
opportunity came up and we just sort

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of were like thinking, you know,

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do we have one more move in us?

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Like, should we do this? And so we did it.

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And ~ I don't know, it's hard not to think
that there was a reason why we did it,

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because it definitely wasn't the easy
option.

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We knew that we were going from a fairly

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convenient life with a backyard and a car
and access to great schools.

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yeah, I mean, like Austin is a pretty is a
dream for ~ a successful family,

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in my opinion. So we knew we were going to
make life harder for ourselves

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by moving to New York. It wasn't like we
were being handed an easy an easy world.

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And then we arrived in the summer and I
put the girls into like

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a local summer school. And then New York
works a little differently.

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So Adelaide was

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headed off to kindergarten a year earlier
than she would have.

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She's a December baby and the cutoff in
New York City goes by

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the calendar year rather than you have to
turn five before September.

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So that was,

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Interesting.

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yeah, it was a new feeling for us,

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but Adelaide was very mature. She's never
been a super easy kid.

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Like she was very defiant, incredibly,

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like if you go to my Instagram page,

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like you will see that she is an
incredibly...

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Yeah, lively person. Like she's managed
to,

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Yeah, spirited.

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yes, spirited, exactly. She's managed to
find

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her way into People Magazine at the age of
five.

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So I mean, like

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my gosh, I love that.

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she is born for something. I don't know
what it is yet,

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but it definitely doesn't seem like it's
going to be a quiet life for her.

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And so when ~ we arrived,

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I didn't worry too much about her going to
kindergarten.

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It made me feel a little anxious,

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but I knew she probably could cope.

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And so off she went and then...

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Three

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weeks in, I had just started a new job.

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I was at Canva for a long time and then I
joined Pinterest,

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which two fantastic brands. it was a very
normal morning before

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kindergarten. you know, a lot of arguments
over which socks she's okay with wearing.

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She had quite bad sensitive issues with
like sensory clothing and just

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has a certain style that she likes.

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She wakes up with a vision every morning.

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~ And so...

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she said to me, like, hey, mommy,

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my head is hurting. And like every mom
whose child says something hurts,

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I honestly, this is the most embarrassing
part of this.

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was like, you probably need to go for a
poop.

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Like, I just remember my mom saying to me
every time,

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like, you probably need to go to the
bathroom.

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Like, probably try number two and then
come and talk to me.

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Yeah, my response

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is always like, have you had any water?

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I know, I'm like,

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yeah, that's a more plausible thing to
say,

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Thank

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whereas my mom would

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always be like, you probably need it.

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The answer is always number two.

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~

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That's amazing.

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Anyway, so even then she was like,

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okay, and then she hopped upstairs to get
dressed.

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And I mean, on the way up, she even said,

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was like, I'm gonna look fabulous today.

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I'm like, I have no doubt. And she walked
into her bedroom.

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and then started, we heard some screaming
and like very normal for her.

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And so we didn't really react.

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And I think I went on with my day,

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Marina, my youngest was two at the time
and she was eating breakfast.

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And so I was doing a lot of that.

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And then, yeah, she...

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continued screaming and it was a scream
that I wasn't necessarily familiar with

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honestly and so my husband was like,

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hey, are you with her? He like poked his
head around.

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I said, no, that doesn't sound right
though,

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so I'm gonna go up. So I nipped upstairs
and I found her on the

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bed holding her head. And again,

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I was sort of a bit confused. was like,

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what's going on? What's going on?

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And she couldn't really find her words and
she was actually screaming for dad,

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which I knew was another sort of odd
thing,

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not that Ross isn't.

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capable of helping, but typically I am the
one that she would call

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for in that sense.

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Great.

236
00:12:27,414 --> 00:12:29,515
And then I felt her skin, was very,

237
00:12:29,515 --> 00:12:34,838
~ she was sweating and the color was
changing in her face to a color that

238
00:12:34,838 --> 00:12:38,501
I can't really even describe. It was like
a gray green is the only

239
00:12:38,501 --> 00:12:40,962
way I can describe it really. yeah,

240
00:12:40,962 --> 00:12:45,384
I asked Ross to come up.

241
00:12:45,384 --> 00:12:47,505
I still was a bit confused and not
worried,

242
00:12:47,505 --> 00:12:48,926
but Ross very quickly was like,

243
00:12:48,926 --> 00:12:49,926
this feels something,

244
00:12:50,340 --> 00:12:51,740
doesn't feel right. I said, yeah,

245
00:12:51,740 --> 00:12:55,180
I don't think so. And the quickest way for
us to get to the ER was

246
00:12:55,180 --> 00:12:58,700
for my husband Ross to put her in a
stroller and run her up.

247
00:12:58,700 --> 00:13:02,820
We live three blocks from New York
Presbyterian.

248
00:13:02,820 --> 00:13:08,500
And so it was like, it's a Brooklyn ER
hospital,

249
00:13:08,500 --> 00:13:12,500
which is fantastic. And so he threw her in
the stroller and ran her up.

250
00:13:12,500 --> 00:13:15,640
I walked Marina to school and I said I'd
meet them there.

251
00:13:15,640 --> 00:13:17,480
By the time I arrived,

252
00:13:18,910 --> 00:13:19,910
Ross

253
00:13:19,170 --> 00:13:21,451
had messaged me saying, she started
vomiting.

254
00:13:21,451 --> 00:13:23,982
So they are going to take us for a CT
scan.

255
00:13:23,982 --> 00:13:26,183
And I had said in my messages to him,

256
00:13:26,183 --> 00:13:30,044
and I look back, I'm like, make sure you
push for a CT before she'd started

257
00:13:30,044 --> 00:13:33,586
vomiting. Because yeah, I think we both
felt that there was something wrong.

258
00:13:33,586 --> 00:13:36,647
I honestly thought it was still a virus
though at that point.

259
00:13:36,440 --> 00:13:37,440
Yeah.

260
00:13:36,647 --> 00:13:37,647
was

261
00:13:36,867 --> 00:13:41,649
thinking, I just read an article the night
before about a flesh eating bacteria from

262
00:13:41,649 --> 00:13:43,600
a shrimp. And I was like, she had shrimp
this week.

263
00:13:43,600 --> 00:13:44,600
This is probably it.

264
00:13:44,706 --> 00:13:45,706
Yes.

265
00:13:46,171 --> 00:13:47,171
And so.

266
00:13:48,161 --> 00:13:51,334
I thought, okay, she'll probably be put on
like an IV and she'll be back

267
00:13:51,334 --> 00:13:53,866
to her normal self and this will be just a
blip in the road.

268
00:13:53,866 --> 00:13:57,739
And I arrived and she was being wheeled
out of the CT area

269
00:13:57,739 --> 00:14:04,453
and the ER people put us into a room and
said that they'll come

270
00:14:04,453 --> 00:14:06,886
and find us as soon as the CT results are
back.

271
00:14:06,886 --> 00:14:09,238
we sat there with her for a while,

272
00:14:09,238 --> 00:14:11,590
just kind of not really knowing anything.

273
00:14:11,590 --> 00:14:14,072
I had texted my mom to say what had
happened,

274
00:14:14,072 --> 00:14:17,114
but again, wasn't worried. It was only
when

275
00:14:18,535 --> 00:14:23,578
the doctor came in and she had two people
with her and ~ she introduced

276
00:14:23,578 --> 00:14:27,431
a child life specialist and was like this
is the child life specialist she's going

277
00:14:27,431 --> 00:14:32,565
to stay with Adelaide while ~ I talk to
mom and dad and so that's when

278
00:14:32,565 --> 00:14:38,989
the ER doctor took us into a different
room and shared that they

279
00:14:39,709 --> 00:14:44,913
had found an area where they saw a lot of
blood in her left temporal lobe

280
00:14:45,774 --> 00:14:47,875
and I think at that point

281
00:14:48,693 --> 00:14:50,564
Again, I didn't really know what that
meant,

282
00:14:50,564 --> 00:14:52,745
but I think the first thing you think of
is just like,

283
00:14:52,745 --> 00:14:57,017
well, like this is it now. She's obviously
got an enormous tumor in her brain

284
00:14:56,545 --> 00:14:57,545
Right.

285
00:14:57,017 --> 00:14:59,768
and like life is gonna be very different.

286
00:14:59,768 --> 00:15:04,230
And very quick to tell us that it could
have been three things.

287
00:15:04,230 --> 00:15:06,391
She could have like hurt her head
severely,

288
00:15:06,391 --> 00:15:09,393
but it would have needed to be a very
obvious like knock,

289
00:15:09,393 --> 00:15:14,285
which we couldn't think of anything that
had happened in the last hour and.

290
00:15:14,604 --> 00:15:18,086
you know, she was saying to us it needed
to have been really obvious.

291
00:15:18,086 --> 00:15:23,679
And then second option was that it was
something called an AVM,

292
00:15:23,679 --> 00:15:28,252
which is an abnormal connection between a
vein and an artery that had

293
00:15:28,712 --> 00:15:33,935
led to a rupture. Or there was potentially
something more sinister happening that

294
00:15:33,935 --> 00:15:38,198
they couldn't see, it was causing
pressure,

295
00:15:38,198 --> 00:15:40,589
which meant that there had been a bleed.

296
00:15:41,439 --> 00:15:45,322
Regardless, like the plan was that we
needed to get to Cornell,

297
00:15:45,322 --> 00:15:48,965
which was the sister hospital to ~
Presbyterian,

298
00:15:48,965 --> 00:15:53,249
which was great. So they had already
alerted the neuro team at Cornell.

299
00:15:53,249 --> 00:15:59,625
And at that point, was kind of like then
they just told

300
00:15:59,625 --> 00:16:02,237
us what to do, which was great because at
that point I just,

301
00:16:02,237 --> 00:16:03,438
I

302
00:16:02,968 --> 00:16:03,968
Yeah.

303
00:16:03,618 --> 00:16:05,980
didn't really know how to react or
respond.

304
00:16:05,980 --> 00:16:09,473
didn't know what this meant in terms of
time or.

305
00:16:10,307 --> 00:16:11,307
prognosis,

306
00:16:11,127 --> 00:16:14,089
we just didn't know anything. And so she's
sort of said,

307
00:16:14,089 --> 00:16:16,670
like, Dad, you're going home, you'll pack
a bag.

308
00:16:16,670 --> 00:16:21,182
You'll need pajamas and some clothes for
both of you and like sort

309
00:16:21,182 --> 00:16:23,773
out childcare for your sister,

310
00:16:23,773 --> 00:16:27,415
her sister. And then, Mom, why don't you
go in the ambulance with her?

311
00:16:27,415 --> 00:16:30,006
Which, and that seemed like the best thing
to do.

312
00:16:30,006 --> 00:16:33,278
So we did that. And we were raced across
the city,

313
00:16:33,278 --> 00:16:35,779
which they sedated her and.

314
00:16:36,227 --> 00:16:40,840
~ and gave us some anti-seizure medication
to ensure that we'd get there safely.

315
00:16:40,840 --> 00:16:42,682
And then by the time we arrived,

316
00:16:42,682 --> 00:16:47,866
we went underground and the doors opened
up and there was an entire team waiting

317
00:16:47,866 --> 00:16:53,660
for us already. It was so scarily
organized that it just,

318
00:16:53,660 --> 00:16:58,844
yeah, it was both simultaneously
reassuring

319
00:16:58,844 --> 00:17:02,207
and also ~ just like an incredibly...

320
00:17:03,008 --> 00:17:05,609
stark insight to how serious this was.

321
00:17:05,609 --> 00:17:11,171
they took us straight to another scan.

322
00:17:11,171 --> 00:17:14,252
They did an MRI this time with contrast or
an MRA.

323
00:17:14,252 --> 00:17:19,064
can't quite remember the naming
conventions to make sure that there

324
00:17:19,064 --> 00:17:22,235
had been no additional bleeding since we
left the previous hospital.

325
00:17:22,235 --> 00:17:24,376
And it seemed as though she was stable.

326
00:17:24,376 --> 00:17:30,108
And so they decided to keep her overnight
before they did an angiogram,

327
00:17:30,108 --> 00:17:31,299
which was going to be the first

328
00:17:31,511 --> 00:17:34,863
is the first thing that you do to explore
something in the brain.

329
00:17:34,863 --> 00:17:40,097
We were given a child life specialist who
was really fantastic,

330
00:17:40,097 --> 00:17:44,341
able to sort of walk me through everything
that was happening ~ and

331
00:17:44,341 --> 00:17:45,681
she just didn't leave my side.

332
00:17:45,681 --> 00:17:47,983
And for the first like four hours,

333
00:17:47,983 --> 00:17:51,956
she really sat with me, just helping me
understand.

334
00:17:51,956 --> 00:17:55,919
This is a teaching hospital, so the staff
were huge.

335
00:17:54,017 --> 00:17:55,017
Yeah.

336
00:17:55,919 --> 00:17:56,980
That was a massive

337
00:17:56,980 --> 00:17:57,980
staff.

338
00:17:58,947 --> 00:18:00,807
And then it was a waiting game,

339
00:18:00,807 --> 00:18:04,607
honestly. It was like the next day we had
to wait for our angiogram appointment.

340
00:18:04,607 --> 00:18:09,767
within that time I was having calls with
the social worker.

341
00:18:09,767 --> 00:18:13,627
The neurosurgeon had told us that they
were pretty confident it was

342
00:18:13,627 --> 00:18:20,107
an AVM and nothing else. And that was both
like good and bad in that like she's

343
00:18:20,107 --> 00:18:24,067
stable. She is showing signs. She was
lucid,

344
00:18:24,067 --> 00:18:25,467
but very...

345
00:18:27,221 --> 00:18:32,795
slow, but both had, she had, she had
function in both hands and she was able

346
00:18:32,795 --> 00:18:37,028
to talk when you talk to her, she seemed
to have like cognitive function.

347
00:18:37,028 --> 00:18:39,815
So they knew that, that she was right now,

348
00:18:39,815 --> 00:18:42,626
it had not caused any damage where it,

349
00:18:42,626 --> 00:18:43,982
where was any swelling in the brain.

350
00:18:43,982 --> 00:18:48,645
And so we were just on like a 24 hour
watch to make sure that it didn't look
like

351
00:18:48,746 --> 00:18:50,176
there was additional bleeding,

352
00:18:50,176 --> 00:18:51,457
that it started to bleed again,

353
00:18:51,457 --> 00:18:53,459
which would then have then meant that we
would have had to have

354
00:18:53,459 --> 00:18:55,470
had an emergency craniotomy. So,

355
00:18:57,112 --> 00:19:02,084
we went in for the angiogram, which I
didn't realize was as sort of serious

356
00:19:02,084 --> 00:19:04,895
as it was. was, you know, she goes to
sleep for,

357
00:19:04,895 --> 00:19:07,967
~ like, she went, well,

358
00:19:07,967 --> 00:19:09,838
in the end, she was asleep for four and a
half,

359
00:19:09,838 --> 00:19:14,540
five hours, and they put something into
your groin,

360
00:19:14,540 --> 00:19:19,872
go up into, and they watch the contrast
and the flow of the blood to

361
00:19:19,872 --> 00:19:21,663
see how severe this is.

362
00:19:22,515 --> 00:19:23,515
there

363
00:19:22,805 --> 00:19:29,478
are kind of an AVM is a very large tangle
of capillaries between a vein

364
00:19:29,478 --> 00:19:35,431
and an artery and vein being a low
pressure hose and ~ artery being high
pressure

365
00:19:35,431 --> 00:19:36,515
and so

366
00:19:36,151 --> 00:19:37,151
Yeah.

367
00:19:36,881 --> 00:19:41,784
when those capillaries get tangled it can
create a swelling of sorts

368
00:19:41,784 --> 00:19:44,795
and then it ruptures. You're born with it
likely,

369
00:19:44,795 --> 00:19:47,606
there's a likelihood that you are it's
just unfortunately

370
00:19:47,606 --> 00:19:49,567
a malformation that happens at birth that

371
00:19:49,953 --> 00:19:53,286
Some people live with their entire lives
and you wouldn't know,

372
00:19:53,286 --> 00:19:58,380
it wouldn't have ruptured because your
body is able to kind of the blood through.

373
00:19:58,380 --> 00:20:04,655
Unfortunately Adelaide's wasn't and it was
going to have ruptured at some point.

374
00:20:04,655 --> 00:20:06,597
We were very lucky that it ruptured.

375
00:20:06,597 --> 00:20:10,850
Adelaide fell into this like 1 % chance of
everything that we went through.

376
00:20:10,850 --> 00:20:12,541
They

377
00:20:11,159 --> 00:20:12,159
Wow.

378
00:20:13,122 --> 00:20:16,924
unenrolled her from school. They told us
that we would need to find

379
00:20:16,924 --> 00:20:19,347
an apartment close to the hospital and
so...

380
00:20:20,411 --> 00:20:24,575
Yeah, it was a very big 24 hours where we
were trying to work out like

381
00:20:24,575 --> 00:20:27,227
how our life was going to continue
operating.

382
00:20:27,227 --> 00:20:33,132
But then I had this like deep feeling that
also this is why we were in New York.

383
00:20:33,132 --> 00:20:34,883
This is why we were pulled to New York.

384
00:20:34,883 --> 00:20:39,007
I am, you know, was born a Catholic.

385
00:20:39,007 --> 00:20:41,949
I am, I, but I wouldn't say I'm practicing
and,

386
00:20:41,949 --> 00:20:47,113
it felt very hard not to believe that
there was something else looking out

387
00:20:46,817 --> 00:20:47,817
Yeah.

388
00:20:47,113 --> 00:20:48,775
for us at that point. It was really

389
00:20:49,141 --> 00:20:52,683
a very strange feeling. So yeah,

390
00:20:52,683 --> 00:20:55,354
mean, then it kind of shifted overnight,

391
00:20:55,354 --> 00:20:59,306
which was that they did the angiogram and
then halfway through the surgeon,

392
00:20:59,306 --> 00:21:02,677
the pediatric intravascular neurosurgeon,

393
00:21:02,677 --> 00:21:09,045
which I didn't realize is like so many
layers deep when it comes to
specialization.

394
00:21:08,579 --> 00:21:09,579
Yeah.

395
00:21:09,045 --> 00:21:12,472
There's like a pediatrician, then there's
a neurosurgeon who is a pediatrician,

396
00:21:12,472 --> 00:21:13,762
then there's an intravascular,

397
00:21:13,762 --> 00:21:15,483
like it just, there's so many layers.

398
00:21:13,922 --> 00:21:15,618
Yeah, and you're just so

399
00:21:15,618 --> 00:21:18,126
grateful that they have that specific
expertise.

400
00:21:18,245 --> 00:21:19,715
I mean, I just couldn't believe it.

401
00:21:19,715 --> 00:21:20,715
And they

402
00:21:19,946 --> 00:21:21,135
were like, this is the person,

403
00:21:21,135 --> 00:21:22,557
this is the best person in the world,

404
00:21:22,557 --> 00:21:24,449
Dr. Justin Schwartz. And I will

405
00:21:24,898 --> 00:21:25,898
Wow.

406
00:21:25,549 --> 00:21:29,422
remember his name forever. And he came out
and was like,

407
00:21:29,422 --> 00:21:35,106
this is actually a much simpler connection
than we thought it was going to be.

408
00:21:35,106 --> 00:21:36,667
It looks like a direct connection.

409
00:21:36,667 --> 00:21:42,061
So there is only really a few areas where
the blood is flowing through.

410
00:21:42,061 --> 00:21:44,963
We think rather than a craniotomy,

411
00:21:45,615 --> 00:21:46,886
which was originally the plan.

412
00:21:46,886 --> 00:21:49,849
Originally they had said it was probably
going to be a series of angiograms

413
00:21:49,849 --> 00:21:55,043
to block off some areas of blood flow and
then a craniotomy to remove the tangle.

414
00:21:55,043 --> 00:22:00,659
But it looked like they could fix it there
and then.

415
00:22:00,659 --> 00:22:05,092
And that was a hard, was simultaneously
fantastic,

416
00:22:05,092 --> 00:22:10,077
but also really hard to know because we
had to make a decision in that moment when

417
00:22:10,077 --> 00:22:11,778
he came out and he's scrubbed up.

418
00:22:13,235 --> 00:22:14,235
And

419
00:22:13,565 --> 00:22:17,838
at the same time, they had previously told
us that there are three ways to fix this.

420
00:22:17,838 --> 00:22:21,600
You block it with glue, which is not
recommended because it's

421
00:22:21,600 --> 00:22:24,782
not necessarily the strongest way to hold.

422
00:22:24,782 --> 00:22:27,414
There is ~ radiation, which again,

423
00:22:27,414 --> 00:22:30,926
not super recommended. ~ And then there's
a craniotomy,

424
00:22:30,926 --> 00:22:33,147
which is the way it will be cured.

425
00:22:33,147 --> 00:22:35,909
So for them to then come out halfway
through and say,

426
00:22:35,909 --> 00:22:38,995
actually, option one is okay.

427
00:22:39,701 --> 00:22:41,282
suddenly I'm asking these questions like,

428
00:22:41,282 --> 00:22:42,792
but you said it wasn't the right thing.

429
00:22:42,792 --> 00:22:45,706
And he's like, that was when we thought it
was a true AVM,

430
00:22:45,706 --> 00:22:49,069
a huge tangle of capillaries. This is an
AVF,

431
00:22:49,069 --> 00:22:51,230
which still considered an AVM,

432
00:22:51,230 --> 00:22:53,512
but it's a direct connection versus a
tangle.

433
00:22:53,512 --> 00:22:55,394
And of course nothing's linear.

434
00:22:55,394 --> 00:22:58,366
There's no perfect description for one
thing or the other when it comes

435
00:22:58,366 --> 00:23:03,830
to the human body. So we had to trust him
and they fixed it.

436
00:23:03,830 --> 00:23:08,794
They put three metal coils into various
like areas to stop blood flow.

437
00:23:08,794 --> 00:23:09,794
And then they

438
00:23:09,656 --> 00:23:11,157
filled it with something called Onyx,

439
00:23:11,157 --> 00:23:12,727
which is this medical grade glue.

440
00:23:12,727 --> 00:23:19,080
And then she came out and it was about a
week's worth of recovery.

441
00:23:19,080 --> 00:23:24,101
So we went from thinking that this was a
six month process where we were going

442
00:23:24,101 --> 00:23:28,953
to be recovering hugely and she was gonna
have to be enrolled in hospital school

443
00:23:28,953 --> 00:23:30,604
and our lives were gonna have shifted.

444
00:23:30,604 --> 00:23:33,335
I had just started a new job and so I was
having to tell

445
00:23:32,963 --> 00:23:33,963
Yeah.

446
00:23:33,335 --> 00:23:38,287
my work that, my life might look a little
different moving forward to...

447
00:23:38,773 --> 00:23:42,014
okay, she might be able to be discharged
by the end of this week

448
00:23:42,014 --> 00:23:46,765
and hard to believe, but it happened and
she is

449
00:23:46,765 --> 00:23:50,286
now an incredibly healthy, happy kid.

450
00:23:50,286 --> 00:23:52,087
we just had our two weeks ago,

451
00:23:52,087 --> 00:23:55,167
we just had her for her six month MRI,

452
00:23:55,167 --> 00:24:01,549
MRI with contrast. And it's like looking
like it's holding and there's no shunting,

453
00:24:01,549 --> 00:24:04,270
which means there's no blood pooling or
blood flow

454
00:24:03,789 --> 00:24:04,789
Right.

455
00:24:04,270 --> 00:24:07,531
in the area. And so we've been given
another year of

456
00:24:08,483 --> 00:24:12,527
sort of safety, I suppose, before we have
to have another MRI,

457
00:24:12,527 --> 00:24:15,140
MRA. And then six months after that,

458
00:24:15,140 --> 00:24:16,381
we will have another angiogram,

459
00:24:16,381 --> 00:24:19,394
which will really kind of make sure that
we're looking good,

460
00:24:19,394 --> 00:24:22,096
which will give us like a, another five
year gap,

461
00:24:22,096 --> 00:24:25,691
all being well. So yeah,

462
00:24:25,691 --> 00:24:28,843
I mean, we've kind of reached this point
now where we can take a breath,

463
00:24:28,843 --> 00:24:30,985
which is great. I'll stop there.

464
00:24:29,377 --> 00:24:32,968
Yeah. Right. my goodness.

465
00:24:30,985 --> 00:24:32,607
I've just like unloaded an entire.

466
00:24:32,968 --> 00:24:35,179
No, I have just so many thoughts and
questions.

467
00:24:35,179 --> 00:24:39,190
One is about ~ how unbelievably strong and
well-spoken you are,

468
00:24:39,190 --> 00:24:41,710
like just picturing you're thrown into
this,

469
00:24:41,710 --> 00:24:46,192
that full 24 hours. And one of the things
I always think is miraculous

470
00:24:46,212 --> 00:24:50,480
is these incredible decisions you have to
make with such little information

471
00:24:50,480 --> 00:24:52,934
at your lowest capacity possible,

472
00:24:52,934 --> 00:24:53,934
which is like

473
00:24:53,217 --> 00:24:54,217
Yeah.

474
00:24:53,574 --> 00:24:55,864
overwhelmed, exhausted, not eaten,

475
00:24:55,864 --> 00:24:57,415
completely threatened, like...

476
00:24:57,793 --> 00:25:00,807
and you're making one of the biggest
decisions of your life about saying

477
00:25:00,807 --> 00:25:03,450
yes or no to things. ~

478
00:25:01,987 --> 00:25:02,987
Yeah.

479
00:25:03,450 --> 00:25:06,753
I'm interested now because you're six
months out.

480
00:25:06,753 --> 00:25:11,309
What does she remember and how do you guys
reflect on what happened together?

481
00:25:13,609 --> 00:25:17,231
She remembers a lot. That's my biggest
focus right now,

482
00:25:17,231 --> 00:25:18,231
I would

483
00:25:17,494 --> 00:25:18,494
Yeah.

484
00:25:17,601 --> 00:25:18,601
say,

485
00:25:18,912 --> 00:25:23,385
is managing her ~ ability to...

486
00:25:23,385 --> 00:25:26,468
I'm just gonna make sure. I'm

487
00:25:25,143 --> 00:25:26,143
Yeah, okay.

488
00:25:26,468 --> 00:25:28,059
just gonna... got somebody's...

489
00:25:28,059 --> 00:25:33,042
I'm gonna shut this app down because it's
buzzing and it's distracting me.

490
00:25:39,223 --> 00:25:41,684
Yes, that is my biggest focus right now.

491
00:25:41,684 --> 00:25:45,065
She's very aware of what happened.

492
00:25:45,065 --> 00:25:50,186
She recalls everything from arriving

493
00:25:50,186 --> 00:25:53,457
in the hospital onwards in Cornell.

494
00:25:53,457 --> 00:25:57,809
She doesn't recall it happening and the
actual episode,

495
00:25:57,809 --> 00:26:03,460
~ which I'm grateful for because the
doctors really talk about

496
00:26:03,460 --> 00:26:04,851
how painful that would have been.

497
00:26:06,467 --> 00:26:09,409
Yeah, just the idea that your child is in
that much agony,

498
00:26:09,409 --> 00:26:13,831
just not a pain that an adult could
withstand,

499
00:26:13,831 --> 00:26:19,874
let alone a four-year-old. ~ She's anxious

500
00:26:19,935 --> 00:26:25,438
and it doesn't show up in high anxiety
situations.

501
00:26:25,438 --> 00:26:30,610
I'm not seeing it in, ~ just she's not
able to tell me that she's anxious

502
00:26:30,610 --> 00:26:34,162
in many ways, but I see it. If there is
something...

503
00:26:35,925 --> 00:26:39,367
on her body that is, ~ I know,

504
00:26:39,367 --> 00:26:43,780
a splinter. And I know kids are very
sensitive to things like that.

505
00:26:43,780 --> 00:26:46,903
~ she responds in a different way,

506
00:26:46,903 --> 00:26:49,655
which is that if I say to my husband Ross,

507
00:26:49,655 --> 00:26:51,966
I'm like, looks like Adelaide's got like a
stye.

508
00:26:51,966 --> 00:26:54,328
She's like, don't talk about that.

509
00:26:54,328 --> 00:26:56,860
Do not, she doesn't want me to talk about
it.

510
00:26:56,860 --> 00:27:01,633
Whereas typically I would remember her
before really kind of like leaning into

511
00:27:01,633 --> 00:27:04,195
the hypochondria. Like, like.

512
00:27:02,829 --> 00:27:03,829
Like,

513
00:27:04,538 --> 00:27:05,859
my God, like what's happening?

514
00:27:05,809 --> 00:27:06,831
I need a cast.

515
00:27:05,859 --> 00:27:08,060
Is it so good? Yes, yeah, my

516
00:27:08,060 --> 00:27:09,870
God, like do I need a bandaid over my eye?

517
00:27:09,870 --> 00:27:11,011
We should probably get an eye patch.

518
00:27:11,011 --> 00:27:14,632
Now it's like, don't, no, nothing is
wrong.

519
00:27:14,632 --> 00:27:17,194
Nothing is wrong. You will not talk about
that.

520
00:27:17,194 --> 00:27:19,615
I do not want you to tell anyone about
anything.

521
00:27:19,615 --> 00:27:22,296
Like it's almost like, no, this is not
happening.

522
00:27:22,296 --> 00:27:28,619
And it's a really obvious shift between
the way kids behave about trauma.

523
00:27:28,619 --> 00:27:29,619
She will not.

524
00:27:29,793 --> 00:27:31,674
She does not like addressing it.

525
00:27:31,674 --> 00:27:35,668
And we were in Costa Rica for the spring
break a couple of weeks ago

526
00:27:35,668 --> 00:27:39,611
and she split her chin open and ended up
having to have stitches,

527
00:27:39,611 --> 00:27:42,994
which when it puts into perspective,

528
00:27:42,994 --> 00:27:44,945
when you're a medical parent, not like we
are,

529
00:27:44,945 --> 00:27:46,677
we're like, it's fine.

530
00:27:46,028 --> 00:27:47,261
Yeah, yeah.

531
00:27:48,198 --> 00:27:51,711
And when we went back to school,

532
00:27:51,711 --> 00:27:53,762
I was like, gosh, you're gonna have to
show everybody your stitches

533
00:27:53,762 --> 00:27:55,414
and how brave you were. And she just was
like,

534
00:27:55,414 --> 00:27:56,885
no, I don't need to tell anyone.

535
00:27:56,885 --> 00:27:58,786
She's like, no, I don't want anyone to see
those.

536
00:27:59,787 --> 00:28:03,630
It's like she just wants to be completely
dissociated with anything medical.

537
00:28:03,630 --> 00:28:10,116
And ~ the scan, ~ the best thing that we
have found is to,

538
00:28:10,116 --> 00:28:14,379
know, some kids really prefer not to be
given information upfront.

539
00:28:14,379 --> 00:28:19,534
In advance, some people, some kids or
parents know that it's better

540
00:28:19,534 --> 00:28:24,108
off they don't share information with
their child in advance,

541
00:28:24,108 --> 00:28:25,929
or they should share it just before,

542
00:28:25,929 --> 00:28:27,701
depending on how they respond to it.

543
00:28:29,163 --> 00:28:34,715
It's a really tough line to know where to
sit because Adelaide is

544
00:28:34,715 --> 00:28:39,087
not good with last minute preparation.

545
00:28:39,087 --> 00:28:42,729
also think it drives, for Adelaide
specifically,

546
00:28:42,729 --> 00:28:44,950
it drives a level of mistrust with me.

547
00:28:44,950 --> 00:28:48,671
At the same time, I don't want to tell her
too early so that she's just living

548
00:28:48,671 --> 00:28:52,853
in anxiety. So we try and find that
balance where you feel,

549
00:28:52,853 --> 00:28:55,734
okay, she has enough time to process it,

550
00:28:55,734 --> 00:28:57,855
ask me questions, and I will spend.

551
00:28:58,756 --> 00:29:03,798
three to five days just reassuring her
deeply that she is safe

552
00:29:03,938 --> 00:29:07,970
and ~ that she is allowed to feel all of
those scary thoughts.

553
00:29:07,970 --> 00:29:11,902
Cause it is scary and not gaslight her
into thinking she's crazy,

554
00:29:11,902 --> 00:29:15,444
which we can very much do, which I have
done in the past with splinters.

555
00:29:15,444 --> 00:29:17,170
I'm like, this isn't gonna hurt.

556
00:29:17,170 --> 00:29:18,170
I'm like,

557
00:29:17,261 --> 00:29:18,261
Yeah.

558
00:29:17,765 --> 00:29:22,041
I know it's gonna hurt. So yeah.

559
00:29:20,451 --> 00:29:22,122
For sure. It's such a

560
00:29:22,122 --> 00:29:25,605
slippery slope because yeah, every child
is going to react different,

561
00:29:25,605 --> 00:29:27,576
especially based on what they've been
through.

562
00:29:27,576 --> 00:29:32,570
~ One strategy that can sometimes be
helpful too is giving her the choice

563
00:29:32,570 --> 00:29:36,853
of being like, okay, there's something
happening next Friday that I want

564
00:29:36,853 --> 00:29:38,544
you to know about because it's at the
hospital,

565
00:29:38,544 --> 00:29:42,467
but I'm going to tell you everything you
need to know and then nothing more.

566
00:29:42,467 --> 00:29:44,408
Do you want me to tell you today or
tomorrow?

567
00:29:44,408 --> 00:29:46,189
And just those small little choices.

568
00:29:46,189 --> 00:29:48,511
like, because kids are...

569
00:29:46,273 --> 00:29:48,970
Yes, is. Yeah, that is exactly

570
00:29:48,970 --> 00:29:49,970
right.

571
00:29:49,453 --> 00:29:52,831
Kids can be so good at actually telling us
what they need when they need it.

572
00:29:52,831 --> 00:29:54,215
~

573
00:29:53,623 --> 00:29:54,623
and you'd be surprised

574
00:29:54,487 --> 00:29:56,718
at their choices as well sometimes.

575
00:29:56,449 --> 00:29:57,449
Well,

576
00:29:56,819 --> 00:30:01,661
this is so wild. So my daughter is eight
and we've done the dreaded thing

577
00:30:01,661 --> 00:30:04,222
of like being with her until she fell
asleep from the time,

578
00:30:04,222 --> 00:30:07,024
like she did it until she was three and
then it got cute one night

579
00:30:07,024 --> 00:30:09,125
and then stuff got real. And I'm like,

580
00:30:09,125 --> 00:30:11,246
hey girl, you're going to have to fall
asleep on your own.

581
00:30:11,246 --> 00:30:15,087
I was like, what would make you feel safe
falling asleep alone?

582
00:30:15,087 --> 00:30:19,569
And she was like, can we put the camera
back in my room so I know y'all can see
me?

583
00:30:19,569 --> 00:30:22,290
And I was like, that's the easiest thing.

584
00:30:22,290 --> 00:30:23,290
And I was like, yeah.

585
00:30:23,575 --> 00:30:26,699
So we put the camera back in, she's fallen
asleep on her own.

586
00:30:26,699 --> 00:30:31,726
And I'm just like, all you have to do
sometimes is ask and they're gonna create
what

587
00:30:29,955 --> 00:30:32,535
Yeah, was

588
00:30:31,726 --> 00:30:32,726
they need.

589
00:30:32,535 --> 00:30:36,095
100 % you just have to kind of sometimes
explain it to them and let them,

590
00:30:36,095 --> 00:30:42,015
yeah, I learned that as I learned that
honestly through that time really like

591
00:30:42,015 --> 00:30:48,115
we had a sharp learning curve even when we
had her scan recently

592
00:30:48,115 --> 00:30:51,295
she was asking a lot how they were gonna
put her to sleep.

593
00:30:51,295 --> 00:30:55,815
That was definitely the biggest traumatic
moment for her is this lack

594
00:30:55,815 --> 00:30:58,295
of control over who is putting her to
sleep.

595
00:30:58,295 --> 00:30:59,431
The idea that she isn't

596
00:30:59,852 --> 00:31:04,215
in control of her body, think for her at
that point really freaked her out.

597
00:31:04,215 --> 00:31:08,888
And she remembered it very well from this
surgery.

598
00:31:08,888 --> 00:31:12,220
So when we went back for the MRI,

599
00:31:12,220 --> 00:31:16,163
recently she was very vocal about like,

600
00:31:16,163 --> 00:31:21,606
are they going to do it? And when we got
there and we spoke to the nurse about it,

601
00:31:21,606 --> 00:31:23,457
it was very clear that like she could have
a choice.

602
00:31:23,457 --> 00:31:27,730
We could put a mask over her face or we
could put a shot in it.

603
00:31:27,730 --> 00:31:28,771
We could do an IV.

604
00:31:29,699 --> 00:31:31,759
And I was thinking, like, there's no way
she's gonna want the IV.

605
00:31:31,759 --> 00:31:33,359
And immediately she was like, I want the
IV.

606
00:31:33,359 --> 00:31:35,119
I'm gonna be like, you know, that's a
needle,

607
00:31:35,119 --> 00:31:37,559
right? She was like, yes, I do not want
anything on my face.

608
00:31:37,559 --> 00:31:39,899
I don't want anyone to hold anything on my
face,

609
00:31:39,899 --> 00:31:42,439
I was like, if you want the IV,

610
00:31:42,439 --> 00:31:44,059
I'm okay with that. And she was like,

611
00:31:44,059 --> 00:31:46,379
I do, I want the IV, that is better for
me.

612
00:31:46,379 --> 00:31:51,619
And I was like, great. I was

613
00:31:48,277 --> 00:31:50,656
Good for her to like advocate for herself.

614
00:31:51,619 --> 00:31:52,979
like, and then my head, was like,

615
00:31:52,979 --> 00:31:54,079
my heart was breaking slightly.

616
00:31:54,079 --> 00:31:57,419
And I was like, God, a child that would
prefer to have.

617
00:31:57,739 --> 00:32:02,976
a needle stuck into her arm or hand over a
face mark is a sign of a child that

618
00:32:02,976 --> 00:32:04,128
has been through some

619
00:32:04,075 --> 00:32:06,637
and through some stuff, Yeah.

620
00:32:04,128 --> 00:32:06,571
shit. Yeah.

621
00:32:06,897 --> 00:32:12,221
Honestly, the smell of the sevoflumarine
alone can be just really triggering.

622
00:32:10,887 --> 00:32:13,499
Perhaps that's honestly it. Yeah,

623
00:32:12,221 --> 00:32:15,783
Yeah. ~

624
00:32:13,499 --> 00:32:16,581
perhaps that's it. Yeah.

625
00:32:16,581 --> 00:32:20,693
The medical smells in general are quite
unbelievable.

626
00:32:20,693 --> 00:32:25,015
don't, if anyone has experienced the smell
of onyx before,

627
00:32:25,015 --> 00:32:28,717
some people I don't think have a gene that
can smell it.

628
00:32:28,717 --> 00:32:31,179
But when she came out of surgery,

629
00:32:31,179 --> 00:32:34,651
obviously as a mother, all you want to do
is like get into the bed with them

630
00:32:34,651 --> 00:32:36,362
and just like hold them.

631
00:32:35,021 --> 00:32:36,906
Yeah. Yeah.

632
00:32:36,942 --> 00:32:38,253
And when I tell you...

633
00:32:38,791 --> 00:32:40,312
She smelled so bad.

634
00:32:40,333 --> 00:32:41,333
Yeah.

635
00:32:40,892 --> 00:32:44,114
I could not cope. I kept getting closer
and being like,

636
00:32:44,114 --> 00:32:47,176
I can't kiss her. She smells so awful.

637
00:32:47,176 --> 00:32:49,007
What is that? That's the onyx.

638
00:32:49,007 --> 00:32:50,118
I was like, what is that?

639
00:32:49,397 --> 00:32:50,397
Wow.

640
00:32:50,338 --> 00:32:52,155
And it was seeping out of everywhere.

641
00:32:52,155 --> 00:32:53,410
was like, isn't it in her brain?

642
00:32:53,410 --> 00:32:56,552
They said, yeah, but it comes out through
her nose,

643
00:32:56,552 --> 00:32:58,883
through her mouth, like through her pores.

644
00:32:58,883 --> 00:33:01,775
I honestly, I couldn't be near her.

645
00:33:01,775 --> 00:33:04,346
It was so awful. So yeah.

646
00:33:03,172 --> 00:33:05,594
~ my gosh.

647
00:33:05,854 --> 00:33:09,236
One of the things you said at the
beginning of this was how important
community

648
00:33:09,236 --> 00:33:13,819
is to you. Have you connected with other
parents who have gone through something

649
00:33:13,819 --> 00:33:18,483
like this? like, obviously like after you
were in fight or flight

650
00:33:18,483 --> 00:33:22,425
and like needing to be there for those
seven days,

651
00:33:22,425 --> 00:33:24,547
were you like, did this happen to anybody
else?

652
00:33:26,047 --> 00:33:27,047
Immediately

653
00:33:26,788 --> 00:33:30,952
afterwards, my child life specialist did
connect me with a woman

654
00:33:30,952 --> 00:33:32,733
who had been through something similar.

655
00:33:32,733 --> 00:33:38,168
And I am incredibly embarrassed and
ashamed to say that I didn't

656
00:33:38,168 --> 00:33:42,722
end up joining the call. And ~ I think
that was out of,

657
00:33:42,722 --> 00:33:45,125
I probably scheduled it too close.

658
00:33:45,125 --> 00:33:48,908
And ~ yeah,

659
00:33:48,908 --> 00:33:51,811
I just don't think my body was ready to
even address.

660
00:33:51,555 --> 00:33:52,555
I think you

661
00:33:51,906 --> 00:33:53,502
did the smart thing. No shame here.

662
00:33:53,502 --> 00:33:54,887
If you can't do it, you

663
00:33:53,996 --> 00:33:54,996
Okay, well.

664
00:33:54,887 --> 00:33:55,887
can't do it. And you know what?

665
00:33:55,649 --> 00:33:57,798
That mom more than anybody understands.

666
00:33:58,763 --> 00:34:03,925
I hope so. I I also felt a level

667
00:34:03,925 --> 00:34:06,865
of ~ survivor's guilt, I think,

668
00:34:06,865 --> 00:34:13,059
because ~ I did join Facebook groups that
showcased ~ a lot

669
00:34:13,059 --> 00:34:15,150
of parents who have been through the same
thing.

670
00:34:15,150 --> 00:34:18,391
It wasn't even parents. There's not really
parents,

671
00:34:18,391 --> 00:34:21,522
actually. It was more like people who have
been through the same thing.

672
00:34:21,522 --> 00:34:24,674
It's not that common for children to have
this.

673
00:34:24,674 --> 00:34:27,335
Like, five is quite early for it to
rupture.

674
00:34:27,335 --> 00:34:28,335
I mean,

675
00:34:28,171 --> 00:34:32,934
a lot of the people that I came across
were much older who had had it ruptured.

676
00:34:32,934 --> 00:34:38,397
Sometimes it can take a really long time
for a ~ vein to withstand it,

677
00:34:38,397 --> 00:34:43,820
the amount of blood flow. So I couldn't
really find many people that

678
00:34:43,820 --> 00:34:50,323
had kids that had had this. And the ones
that I did see online,

679
00:34:50,323 --> 00:34:56,737
it was too hard for me to even look at
them because it f-

680
00:34:58,368 --> 00:34:59,368
We

681
00:34:58,578 --> 00:35:04,992
were so lucky, you know, that the brain is
a slow repairing organ.

682
00:35:04,992 --> 00:35:10,135
It is not an easy place to access a lot of
the time.

683
00:35:10,135 --> 00:35:14,878
If not, the majority have ended up with
long term.

684
00:35:17,784 --> 00:35:19,285
like challenges and abilities,

685
00:35:19,285 --> 00:35:26,071
or they didn't make it. So I am acutely
aware of how lucky we are as parents.

686
00:35:26,071 --> 00:35:29,534
And especially when you live on them,

687
00:35:29,534 --> 00:35:33,847
pick you for long enough, you see families
come and go with good news

688
00:35:33,847 --> 00:35:39,143
and really bad news. And I think once I
joined those Facebook groups,

689
00:35:39,143 --> 00:35:43,486
I realized it wasn't a healthy place for
me to be.

690
00:35:44,427 --> 00:35:49,602
and perhaps in a year's time I will rejoin
and find more of a support network

691
00:35:49,602 --> 00:35:55,617
to have children that are recovering from
say medical anxiety,

692
00:35:55,617 --> 00:36:01,183
rather than it being specific to AVMs
because AVMs are such a...

693
00:36:03,855 --> 00:36:08,358
I mean, yeah, it's not that you don't get
that lucky with these.

694
00:36:07,607 --> 00:36:11,375
Yeah, yeah, there's a full spectrum of
what it can look like after.

695
00:36:08,358 --> 00:36:11,000
So yeah, unfortunately,

696
00:36:12,121 --> 00:36:17,144
there's not that many parents that have
the ability to say this.

697
00:36:17,144 --> 00:36:20,866
But if there is anyone out there that
wants to talk,

698
00:36:20,663 --> 00:36:21,894
Well, I love that that's

699
00:36:20,866 --> 00:36:21,866
and...

700
00:36:21,894 --> 00:36:25,307
why you're doing it because you're so
worthy of that support too.

701
00:36:25,307 --> 00:36:30,060
But I completely understand like not
wanting to be there and maybe it never
will

702
00:36:30,060 --> 00:36:32,863
be at a time and that's okay too.

703
00:36:32,461 --> 00:36:35,592
Yeah, I think, no, no, you go.

704
00:36:32,863 --> 00:36:35,905
Tilly, yeah, go ahead. No, no,

705
00:36:35,905 --> 00:36:36,905
you go.

706
00:36:36,812 --> 00:36:43,114
Well, I think that post the ~ ordeal,

707
00:36:43,114 --> 00:36:46,395
she began to get nosebleeds as well,

708
00:36:46,395 --> 00:36:49,586
which I don't know if I mentioned that,

709
00:36:49,586 --> 00:36:54,918
but she started to show ~ these sort of
spontaneous nosebleeds.

710
00:36:54,918 --> 00:36:57,018
And of course, like after brain surgery,

711
00:36:57,018 --> 00:36:58,839
if you spot a nosebleed, you panic.

712
00:36:58,839 --> 00:36:59,839
And so...

713
00:37:00,150 --> 00:37:01,150
I

714
00:37:00,370 --> 00:37:05,093
spoke to her neurosurgeon who mentioned
that it really wasn't something that

715
00:37:05,093 --> 00:37:10,416
he was concerned about. And I then began
to think nothing of it.

716
00:37:10,416 --> 00:37:12,623
I trusted him and then, and I still do,

717
00:37:12,623 --> 00:37:18,650
I wanna make that very clear. She did
continue to get nosebleeds,

718
00:37:18,650 --> 00:37:21,872
however, and they seem to be getting kind
of like more frequent than they were

719
00:37:21,872 --> 00:37:24,413
infrequent. And then I thought back and I
was like,

720
00:37:24,413 --> 00:37:26,354
she was a pretty nosebleedy kid.

721
00:37:26,354 --> 00:37:27,935
That's unusual.

722
00:37:28,609 --> 00:37:32,021
And I did what every parent should not do
when you've been through medical trauma,

723
00:37:32,021 --> 00:37:36,093
and I Googled. And I do not recommend Dr.

724
00:37:36,093 --> 00:37:40,956
Google. However, if you do end up in that
world,

725
00:37:40,956 --> 00:37:42,557
which is inevitable, unfortunately,

726
00:37:42,557 --> 00:37:48,930
all parents do, you try and gather
information from everywhere you can.

727
00:37:48,930 --> 00:37:54,053
And podcasts were my second area where I
started to look,

728
00:37:54,053 --> 00:37:56,434
because I came across this

729
00:37:57,953 --> 00:38:00,815
potential diagnosis, was called HHT,

730
00:38:00,815 --> 00:38:04,368
which was hemorrhagic. In fact,

731
00:38:04,368 --> 00:38:07,601
I've written it down here because I knew I
be able to say it.

732
00:38:07,601 --> 00:38:13,236
Here we go. Hereditary hemorrhagic
telangiectasia,

733
00:38:13,236 --> 00:38:17,599
which is a mouthful. And ~ it's a genetic,

734
00:38:17,599 --> 00:38:23,114
I suppose it's like a genetic disease,

735
00:38:23,114 --> 00:38:24,765
I suppose, a genetic disorder,

736
00:38:24,765 --> 00:38:26,887
it would be called. ~

737
00:38:27,573 --> 00:38:34,406
which there are sort of four symptoms that
are categorized under this like

738
00:38:34,826 --> 00:38:38,278
for like a potential diagnosis or ~ test,

739
00:38:38,278 --> 00:38:45,221
which was nosebleeds, an AVM, these
basically visible

740
00:38:45,221 --> 00:38:50,133
capillaries on her skin. And then there's
one more,

741
00:38:50,133 --> 00:38:53,515
which is family history. And.

742
00:38:54,390 --> 00:38:56,582
Whilst we had family history of stroke,

743
00:38:56,582 --> 00:38:58,473
which definitely fell into that world,

744
00:38:58,473 --> 00:39:01,892
none of the strokes were before the age of
65,

745
00:39:01,892 --> 00:39:05,728
and so they're considered pretty ~
unfortunate but normal.

746
00:39:05,728 --> 00:39:08,790
However, with the nosebleeds and the AVM,

747
00:39:08,790 --> 00:39:13,383
and she did have and does have ~ visible
capillaries on her cheeks,

748
00:39:13,383 --> 00:39:15,775
which I have always seen from a young age
and thought,

749
00:39:15,775 --> 00:39:17,516
well, she's just, they're pretty normal.

750
00:39:18,820 --> 00:39:23,192
~ And so I began to do my homework and I
really pushed the neuro again

751
00:39:23,192 --> 00:39:27,954
and I asked and asked and asked for a
referral and it was very difficult

752
00:39:27,954 --> 00:39:28,954
to get through to them. You know,

753
00:39:28,954 --> 00:39:33,176
they're moving on to patients that are
more emergent and that is the right thing

754
00:39:33,176 --> 00:39:36,427
to do. I won't fault anyone for that.

755
00:39:36,427 --> 00:39:39,518
Doctors, particularly surgeons like that,

756
00:39:39,518 --> 00:39:42,509
neurosurgeons need to focus on what is
right in front of them and I would want
that

757
00:39:42,509 --> 00:39:45,971
for my own child. So I don't fault them
there for this.

758
00:39:46,817 --> 00:39:50,178
However, like it took a lot for me to get
where I needed to.

759
00:39:50,178 --> 00:39:53,589
I needed to switch pediatricians because
they were not taking

760
00:39:53,609 --> 00:39:56,650
my like asks seriously.

761
00:39:56,650 --> 00:40:02,189
I ended up listening to a podcast of a
person who worked in

762
00:40:02,189 --> 00:40:07,463
an HHT excellence center. And I found that
particular doctor on Instagram.

763
00:40:07,463 --> 00:40:09,933
I messaged him on Instagram. I sent him
all

764
00:40:07,874 --> 00:40:09,570
my gosh, you're amazing.

765
00:40:09,947 --> 00:40:12,924
of Adelaide's papers. And I said,

766
00:40:12,924 --> 00:40:15,131
like, is this worth me looking at?

767
00:40:15,131 --> 00:40:16,195
Do you think I'm crazy?

768
00:40:17,203 --> 00:40:21,345
I know that parents, promise I'm not like
trying to make her sick.

769
00:40:21,345 --> 00:40:24,866
don't want her to have this. I just wanna
make sure I'm not missing anything.

770
00:40:24,866 --> 00:40:27,407
And then he reached back out and said,

771
00:40:27,407 --> 00:40:33,130
yes, you definitely need to have a
diagnosis or at least like a review.

772
00:40:33,130 --> 00:40:37,612
But based on my assumption, even if you
didn't come back with a genetic,

773
00:40:37,612 --> 00:40:41,273
a positive genetic diagnosis,

774
00:40:41,273 --> 00:40:44,435
you would meet their criteria for a
clinical diagnosis,

775
00:40:44,435 --> 00:40:45,435
which is when you...

776
00:40:45,885 --> 00:40:49,409
tick enough boxes in order for you to say
it is likely that you have this,

777
00:40:49,409 --> 00:40:52,041
however it's not showing up in your tests,

778
00:40:52,041 --> 00:40:57,226
likely because we haven't actually
uncovered that many variations at this
point

779
00:40:57,226 --> 00:41:01,481
and like over years and years and years as
we do more research more variations will

780
00:41:01,481 --> 00:41:05,264
become apparent and we will be able to do
a better job of diagnosing them from

781
00:41:05,264 --> 00:41:08,878
a genetic standpoint and these like
variations between chromosomes.

782
00:41:11,330 --> 00:41:16,682
So he got me a appointment with the HHT
Excellence Center.

783
00:41:16,682 --> 00:41:20,784
We had eventually gotten through to the
people we needed to,

784
00:41:20,784 --> 00:41:26,066
but the appointment wasn't gonna be until
like June and they shifted this man,

785
00:41:26,066 --> 00:41:28,167
this amazing man from Maryland,

786
00:41:28,167 --> 00:41:32,809
shifted our appointment up to April and we
had everything done.

787
00:41:32,809 --> 00:41:38,051
had all of the tests. She did not come
back positive,

788
00:41:38,051 --> 00:41:39,051
which...

789
00:41:38,785 --> 00:41:44,048
Honestly, I was devastated. I felt ~
furious and nobody could understand

790
00:41:44,048 --> 00:41:48,080
why I was furious. And it was purely
because I couldn't understand

791
00:41:48,080 --> 00:41:52,203
why she was continuously having nosebleeds
and she had had the AVM.

792
00:41:52,203 --> 00:41:54,294
I could see these capillaries on her skin.

793
00:41:54,294 --> 00:41:58,526
It made no sense to me. And the reason I
wanted the diagnosis is it puts

794
00:41:58,526 --> 00:42:02,318
us in a category where scans are covered
by insurance.

795
00:42:02,318 --> 00:42:07,111
So additional monitoring ~ would have been
covered and ~

796
00:42:07,671 --> 00:42:12,084
Yeah, it made me furious and I didn't
understand.

797
00:42:12,084 --> 00:42:15,666
And the geneticist we saw was wonderful,

798
00:42:15,666 --> 00:42:19,519
but he didn't feel as though we did meet
enough criteria to meet

799
00:42:19,519 --> 00:42:24,493
a clinical diagnosis. And so our genetics
counselor said she would

800
00:42:24,493 --> 00:42:25,803
do everything she possibly could,

801
00:42:25,803 --> 00:42:29,916
but yeah, if without those like three box
ticked,

802
00:42:29,916 --> 00:42:33,259
we don't really qualify. However,

803
00:42:33,259 --> 00:42:36,661
three weeks later, this beautiful genetics
counselor had

804
00:42:36,867 --> 00:42:42,407
called every person in her phone book and
the pediatric head of

805
00:42:42,407 --> 00:42:46,967
the HHT Excellence Center as part of
Columbia reached out and said,

806
00:42:46,967 --> 00:42:52,926
no, she does qualify. I do not want you to
walk away

807
00:42:52,926 --> 00:42:59,147
not thinking that we will look into this
because we just do not know enough about

808
00:42:59,147 --> 00:43:03,271
this disorder. 11 % of...

809
00:43:03,470 --> 00:43:06,221
people come back with no diagnosis.

810
00:43:06,221 --> 00:43:08,963
We were amazed that she didn't come back
with a diagnosis,

811
00:43:08,963 --> 00:43:13,805
which means that like she probably does
have something that we just don't know
yet.

812
00:43:12,417 --> 00:43:13,417
Yeah.

813
00:43:13,805 --> 00:43:14,805
And so

814
00:43:14,486 --> 00:43:20,169
now we have access to the HHT Excellence
Center ~ for resourcing.

815
00:43:20,169 --> 00:43:23,991
And I think it did help that the day we
went to the genetics testing,

816
00:43:23,991 --> 00:43:27,192
Adelaide was nose bleeding all over the
surgery,

817
00:43:27,192 --> 00:43:30,354
all over the place. was like,

818
00:43:30,354 --> 00:43:32,265
I was in tears. was like,

819
00:43:31,351 --> 00:43:32,673
Wait, wait.

820
00:43:32,619 --> 00:43:35,519
What do you mean she doesn't qualify for a
clinical diagnosis?

821
00:43:35,557 --> 00:43:36,557
usually

822
00:43:35,987 --> 00:43:39,782
kids show up and it's like they've had a
fever for five days and they're like,

823
00:43:39,782 --> 00:43:42,225
I'm totally fine. But she was performing.

824
00:43:40,907 --> 00:43:43,572
I know. It gave me real leverage.

825
00:43:42,225 --> 00:43:43,287
She was ready.

826
00:43:46,317 --> 00:43:47,317
Tilly, what does

827
00:43:46,979 --> 00:43:51,021
it feel like to have to, I don't know if
fight's the right word.

828
00:43:51,021 --> 00:43:54,261
What does it feel like to have to be the
consistent squeaky wheel?

829
00:43:57,165 --> 00:43:58,165
Simultaneously

830
00:43:58,096 --> 00:44:04,482
empowering as a mother, you are on a fight
and just deeply disappointed

831
00:44:04,482 --> 00:44:09,667
~ in the system. mean, I'm no stranger to
complex.

832
00:44:12,319 --> 00:44:14,140
medical systems. I'm from the UK.

833
00:44:14,140 --> 00:44:17,854
have free medicals. We have access to free
medical care,

834
00:44:17,854 --> 00:44:19,915
which I am a huge advocate of,

835
00:44:19,915 --> 00:44:23,188
but it does not come with easy processes.

836
00:44:23,188 --> 00:44:28,742
My mum is my mother has has ulcerative
colitis and

837
00:44:28,742 --> 00:44:32,716
it took her years to get to a diagnosis.

838
00:44:32,716 --> 00:44:37,499
And that's purely just because it it's a
it's a queuing situation.

839
00:44:37,499 --> 00:44:39,261
You line up and you wait your turn.

840
00:44:37,549 --> 00:44:39,957
Right. Yeah.

841
00:44:39,261 --> 00:44:40,261
And it

842
00:44:40,262 --> 00:44:41,793
unfortunately like that is the

843
00:44:42,723 --> 00:44:46,275
not helpful for cancer or more than that,

844
00:44:46,275 --> 00:44:50,947
you know? And so the benefit of America is
that yes,

845
00:44:50,947 --> 00:44:52,477
we have health insurance. However,

846
00:44:52,477 --> 00:44:55,318
that really only helps people with the
means to have that,

847
00:44:55,318 --> 00:44:59,570
which means money. And I knew that at the
end of the day,

848
00:44:59,570 --> 00:45:04,693
we could afford to access a scan should I
want it

849
00:45:05,813 --> 00:45:10,015
and pay for it. But it made me feel a
little bit like I was.

850
00:45:11,928 --> 00:45:13,329
I don't know, there was an element of,

851
00:45:13,329 --> 00:45:16,161
am I like willing her to be sick?

852
00:45:16,161 --> 00:45:18,512
Do I want her to be sick? Like is this,

853
00:45:18,512 --> 00:45:21,474
and I thought that that's what people
thought around me as well,

854
00:45:21,474 --> 00:45:25,917
my husband even. think I was anxious that
he thought I was searching

855
00:45:25,917 --> 00:45:27,558
for something that didn't exist.

856
00:45:27,558 --> 00:45:31,001
I know that there's a, can't even remember
the name of that.

857
00:45:31,001 --> 00:45:33,702
Like what is it called? Okay, good.

858
00:45:31,435 --> 00:45:32,968
I know, I don't like saying it,

859
00:45:32,968 --> 00:45:35,523
but it's monthosomes, right? Yeah.

860
00:45:33,702 --> 00:45:37,285
Yeah, and I did consider that.

861
00:45:35,523 --> 00:45:36,523
Yeah.

862
00:45:37,285 --> 00:45:38,285
I did consider

863
00:45:38,125 --> 00:45:39,987
like, is this a munchausen situation?

864
00:45:39,987 --> 00:45:40,987
Am I like?

865
00:45:41,377 --> 00:45:44,818
willing her to be sick so I can take care
of her.

866
00:45:44,818 --> 00:45:48,873
I don't know. ultimately,

867
00:45:48,873 --> 00:45:52,035
I began to write it down to be like,

868
00:45:52,035 --> 00:45:54,387
let me just put the facts down on paper.

869
00:45:54,387 --> 00:45:57,279
And it just felt undeniable. I just was
like,

870
00:45:54,947 --> 00:45:57,289
So smart. Yeah, so smart.

871
00:45:57,399 --> 00:46:00,311
no. This is what I've been told.

872
00:46:00,311 --> 00:46:02,643
This is the symptoms that she has.

873
00:46:02,643 --> 00:46:07,466
What happens if the alternative is I don't
do this?

874
00:46:07,466 --> 00:46:08,466
And...

875
00:46:08,459 --> 00:46:12,943
she has another AVM and because it wasn't
covered or it wasn't,

876
00:46:12,943 --> 00:46:15,935
I wasn't on top of it, I missed it.

877
00:46:15,213 --> 00:46:16,213
Yeah.

878
00:46:15,935 --> 00:46:16,935
And next

879
00:46:16,406 --> 00:46:21,930
time she won't be so lucky. And I remember
saying to the genetics counselor

880
00:46:21,930 --> 00:46:23,051
in there when they said, look,

881
00:46:23,051 --> 00:46:25,533
we don't, let's see what the test results
come back with,

882
00:46:25,533 --> 00:46:29,196
but we don't think that she qualifies for
a clinical diagnosis.

883
00:46:29,196 --> 00:46:35,791
And I began to cry ~ in the office and
Adelaide

884
00:46:35,791 --> 00:46:37,273
was with me. She had to be with me,

885
00:46:37,273 --> 00:46:38,273
which was...

886
00:46:37,867 --> 00:46:39,829
I did not feel proud of that because I
don't,

887
00:46:39,829 --> 00:46:41,839
I know it's important for them to see your
emotions,

888
00:46:41,839 --> 00:46:45,073
but I didn't want her to feel scared was
the biggest part of

889
00:46:44,674 --> 00:46:45,674
Yeah.

890
00:46:45,073 --> 00:46:51,018
it. And ~ I don't know, I got kind of
angry and said to them,

891
00:46:51,018 --> 00:46:56,732
I guess I just like, don't know how you
would let me walk out of here seeing

892
00:46:56,732 --> 00:46:59,765
her nose bleeding, knowing that she's had
a ruptured AVM,

893
00:46:59,765 --> 00:47:02,197
me showing you these things on her skin,

894
00:47:02,197 --> 00:47:04,749
which you think is just because she's got
pale skin.

895
00:47:04,749 --> 00:47:07,411
Whereas I know that that's not the case.

896
00:47:06,765 --> 00:47:07,765
Right.

897
00:47:08,798 --> 00:47:14,021
and in five years time, her to have
another AVM which ruptures and kills her.

898
00:47:14,021 --> 00:47:18,353
And they found that so confronting when I
said that they were sort

899
00:47:18,353 --> 00:47:21,354
of like almost like tapping words and
doing like,

900
00:47:21,354 --> 00:47:23,736
no, no, no, no, like that's, we don't want
that.

901
00:47:23,736 --> 00:47:25,877
And I was like, I'm not saying that you
want that,

902
00:47:25,877 --> 00:47:27,378
but I'm saying that that's what's,

903
00:47:26,253 --> 00:47:28,129
Right. That's where you're leaving me.

904
00:47:27,378 --> 00:47:29,259
yeah.

905
00:47:28,129 --> 00:47:29,515
Yeah.

906
00:47:29,839 --> 00:47:32,840
And I honestly think that that might've
been the reason why

907
00:47:32,840 --> 00:47:34,912
the genetics counselor worked so hard for
me.

908
00:47:34,912 --> 00:47:37,483
And so all I could say to any parent is,

909
00:47:38,593 --> 00:47:41,014
Write it down in the, like write down the
facts.

910
00:47:41,014 --> 00:47:42,624
Talk to somebody if it's a therapist,

911
00:47:42,624 --> 00:47:48,226
if you need to have like a sound of mind
person to try and like unpack this.

912
00:47:48,226 --> 00:47:54,697
Bring in like credible evidence and make a
choice as to whether you should push.

913
00:47:54,697 --> 00:47:59,169
And I don't know if I should, I would say
trust your gut.

914
00:47:59,169 --> 00:48:04,110
I don't know if I necessarily believe the
gut trusting because I've lived

915
00:48:04,110 --> 00:48:07,871
a world where after having a baby,

916
00:48:08,363 --> 00:48:12,327
sometimes your hormones do things that
tell your gut that something is not,

917
00:48:12,327 --> 00:48:17,001
that is not correct. And so I'm not
necessarily a believer of that,

918
00:48:17,001 --> 00:48:21,836
but I do believe that there is a merit to
writing down what

919
00:48:21,836 --> 00:48:27,541
is 100 % objective and what that means.

920
00:48:27,541 --> 00:48:30,043
And if you're still feeling uncomfortable,

921
00:48:30,043 --> 00:48:33,675
even if it's all signs point to safety,

922
00:48:34,631 --> 00:48:36,112
once you've ruled out everything,

923
00:48:36,112 --> 00:48:41,554
then maybe it is worth looking for help
and from a psychological safety
perspective

924
00:48:41,554 --> 00:48:47,076
and an anxiety perspective. I don't know
enough about this world to know when

925
00:48:47,076 --> 00:48:50,978
you stop and you draw the line on looking
for answers.

926
00:48:50,978 --> 00:48:51,978
I don't know.

927
00:48:52,673 --> 00:48:54,425
love that response. I've never heard that

928
00:48:54,425 --> 00:48:57,690
before, but I really like it. Tilly,

929
00:48:57,690 --> 00:49:02,367
one of my favorite questions when we close
is just hearing some

930
00:49:02,367 --> 00:49:04,800
of your favorite parts of being Adelaide's
mom.

931
00:49:04,800 --> 00:49:06,953
What you love about it.

932
00:49:07,733 --> 00:49:14,510
my goodness, well, my life now exists
before and after the AVM and...

933
00:49:17,218 --> 00:49:24,051
I will say that Adelaide is a different
kid to when after this in a good way,

934
00:49:24,051 --> 00:49:28,994
which is wild. Yes, she has a level of
medical anxiety that I am trying very hard

935
00:49:28,994 --> 00:49:32,896
to get on top of. I'm also advocating for
her to repeat kindergarten,

936
00:49:32,896 --> 00:49:36,228
which if the girl wasn't doing so well,

937
00:49:36,228 --> 00:49:40,400
it would be a lot easier. Me trying to
explain to the school,

938
00:49:40,400 --> 00:49:44,642
I know she's succeeding, but I don't know
if it's the right thing for her.

939
00:49:44,685 --> 00:49:45,685
Yeah.

940
00:49:46,731 --> 00:49:49,744
You know, I think back to all of those
times before,

941
00:49:49,744 --> 00:49:52,536
and she could very well have just been a
difficult four,

942
00:49:52,536 --> 00:49:57,260
three, two, one year old, but there is a
level of patience that that child

943
00:49:57,260 --> 00:50:00,953
has now walked into. And I have spoken to
doctors that say,

944
00:50:00,953 --> 00:50:05,457
you know, kids with AVMs that hadn't
ruptured could have lived with a headache

945
00:50:05,457 --> 00:50:08,810
for a lot of their lives without really
knowing what it was or able to tell

946
00:50:08,810 --> 00:50:12,533
me what it was. But there could have been
a level of,

947
00:50:12,533 --> 00:50:14,975
I suppose, like

948
00:50:15,711 --> 00:50:18,353
irritability that reduces her patience.

949
00:50:18,353 --> 00:50:22,417
And I would be lying if I said that
Adelaide and I had a really strong
connection

950
00:50:22,417 --> 00:50:27,521
up until her AVM. And having that episode,

951
00:50:27,521 --> 00:50:31,385
even if she had been the same exact person
afterwards,

952
00:50:31,385 --> 00:50:34,278
it rewired us as a mother and daughter.

953
00:50:34,278 --> 00:50:37,951
And I have a connection with her that is
so...

954
00:50:39,393 --> 00:50:43,234
deep that I never thought I would reach
and I only potentially had with

955
00:50:43,234 --> 00:50:45,435
my youngest daughter and I am not ashamed
to say that.

956
00:50:45,435 --> 00:50:48,763
I, that is a chemical situation that I
went through where I,

957
00:50:48,763 --> 00:50:51,246
I did not bond with Adelaide and I did
not,

958
00:50:51,246 --> 00:50:55,387
she did not have an ounce of breast milk
and Marina received all

959
00:50:55,387 --> 00:50:57,598
the things that mothers are meant to
receive,

960
00:50:57,598 --> 00:51:01,449
that give their children because of that
hormone imbalance.

961
00:51:01,449 --> 00:51:07,691
so that is just like context for like how
fantastic

962
00:51:07,691 --> 00:51:09,101
my relationship with this, with

963
00:51:09,820 --> 00:51:14,764
is now and so like I want to reassure
parents out there that feel that

964
00:51:14,764 --> 00:51:19,717
way like there are ways to reach that
level of connection again

965
00:51:19,717 --> 00:51:23,269
it doesn't necessarily have to happen in
the form of AVM but

966
00:51:23,470 --> 00:51:29,153
it is possible this child is amazing I got
there there's really only the

967
00:51:29,153 --> 00:51:35,568
way I can explain it she's she is the
absolute she's taken all the best parts

968
00:51:35,568 --> 00:51:37,079
of both Ross and I

969
00:51:37,673 --> 00:51:40,304
and left all of the worst parts behind.

970
00:51:39,703 --> 00:51:40,703
Yes.

971
00:51:40,304 --> 00:51:41,304
She has

972
00:51:40,805 --> 00:51:43,486
like the deepest empathy of anyone I know.

973
00:51:43,486 --> 00:51:48,308
She is the most inquisitive child and she
has been through it all.

974
00:51:48,308 --> 00:51:53,211
She had the worst stranger danger of
anyone I know and now she is like

975
00:51:53,211 --> 00:51:54,971
the mayor of Park Slope, Brooklyn.

976
00:51:54,550 --> 00:51:55,550
Yeah

977
00:51:54,971 --> 00:51:59,093
If anybody knows that, she's managed to
cement herself in every community.

978
00:51:59,093 --> 00:52:02,115
She is like well loved in the Jewish
community in a way that I'm like.

979
00:52:02,793 --> 00:52:04,054
she's obviously gonna convert.

980
00:52:04,054 --> 00:52:05,054
This feels so

981
00:52:04,365 --> 00:52:05,365
Yes.

982
00:52:04,784 --> 00:52:08,238
funny. if anyone again, like, if she
hasn't seen my Instagram page,

983
00:52:08,238 --> 00:52:11,841
she went viral for crying over not being
Jewish and not being able

984
00:52:11,841 --> 00:52:16,015
to celebrate Hanukkah, which of course now
we have like as part of our repertoire.

985
00:52:16,015 --> 00:52:17,015
And

986
00:52:16,451 --> 00:52:17,451
course.

987
00:52:17,236 --> 00:52:20,018
I will not tell her that we actually like,

988
00:52:20,018 --> 00:52:21,880
my family is like probably Jewish.

989
00:52:21,880 --> 00:52:23,802
Like I think we're from like the Ashkenazi
Jew,

990
00:52:23,802 --> 00:52:28,046
like descendants. And so I'm sure like
there is a much easier route for her,

991
00:52:28,046 --> 00:52:29,046
but.

992
00:52:29,781 --> 00:52:35,405
Yeah, I just, I'm continuously blown away
and surprised by

993
00:52:35,405 --> 00:52:38,167
her strength and willingness to do things.

994
00:52:38,167 --> 00:52:41,479
I think as mothers, we underestimate these
children so much.

995
00:52:41,479 --> 00:52:44,701
And actually it's okay if they fail at
something.

996
00:52:44,701 --> 00:52:46,493
It's okay if they don't want to do
something.

997
00:52:46,493 --> 00:52:49,064
Don't be disheartened because like you
might turn a corner

998
00:52:49,064 --> 00:52:51,006
of something different and you find
herself,

999
00:52:51,006 --> 00:52:53,688
like Adelaide wouldn't put shoes on for
the first like,

1000
00:52:53,688 --> 00:52:56,710
I don't know, four years of her life.

1001
00:52:56,710 --> 00:52:58,541
And then suddenly last year,

1002
00:52:58,998 --> 00:53:03,191
over Christmas, she's putting ice skates
on and she's skating.

1003
00:53:03,191 --> 00:53:06,793
the idea that I would ever have been able
to even put a toe in an ice skate

1004
00:53:07,314 --> 00:53:11,857
is just wild to me. And so I think just
this resilience that that child has,

1005
00:53:11,857 --> 00:53:18,621
that's what I love. I love her inquisitive
nature and her deep love for people.

1006
00:53:18,621 --> 00:53:22,283
I love that. I want her,

1007
00:53:22,283 --> 00:53:26,326
my love language is gift giving and
generosity.

1008
00:53:27,703 --> 00:53:31,576
I used to be more gift giving with my time
and like now I think I have

1009
00:53:31,576 --> 00:53:33,748
a very busy life with work and these kids.

1010
00:53:33,748 --> 00:53:37,681
So now I try and be more of just an actual
physical gift giver and hopefully

1011
00:53:37,681 --> 00:53:39,372
one day my time will come back again.

1012
00:53:39,372 --> 00:53:45,187
But I hope that I can continue to foster
that in her and I'm already seeing it.

1013
00:53:45,187 --> 00:53:49,561
And when you see those amazing like
qualities that you wish your child

1014
00:53:50,081 --> 00:53:54,885
had start to exist beyond you telling them
to do that is just like

1015
00:53:54,885 --> 00:53:56,887
the proudest moment and I'm seeing it
every day.

1016
00:53:57,345 --> 00:53:58,928
Marina, her younger sister, has a way to
go.

1017
00:53:58,928 --> 00:53:59,928
I will say that.

1018
00:54:01,034 --> 00:54:02,034
I

1019
00:54:01,244 --> 00:54:05,019
love it. I feel like she's just going to
keep surprising you like at every turn.

1020
00:54:05,019 --> 00:54:06,021
actually

1021
00:54:05,366 --> 00:54:06,366
I think so.

1022
00:54:06,021 --> 00:54:08,595
when you were saying that her AVM
experience,

1023
00:54:08,595 --> 00:54:10,238
she was in the 1 % the whole time,

1024
00:54:10,238 --> 00:54:13,733
it's just like a testament to like she's
going to keep you on your toes

1025
00:54:13,733 --> 00:54:14,945
in a really beautiful way.

1026
00:54:15,631 --> 00:54:20,363
She is. She's wonderful and I feel so
lucky in so many senses of the word

1027
00:54:20,363 --> 00:54:22,494
and I just don't take that word for
granted.

1028
00:54:22,494 --> 00:54:24,105
I know we throw it around a lot,

1029
00:54:24,105 --> 00:54:30,664
but my whole world has been built around
luck this year and it's kind of
undeniable.

1030
00:54:30,664 --> 00:54:34,469
As somebody, I was talking to my husband
the other day once a long time ago,

1031
00:54:34,469 --> 00:54:39,621
this woman called Jo Theresa, who was my
manager in Singapore,

1032
00:54:39,621 --> 00:54:44,203
an agency. I will say she was an absolute
nightmare and she will agree with me here.

1033
00:54:45,003 --> 00:54:46,804
But she asked me an interview question,

1034
00:54:46,804 --> 00:54:49,185
do you believe in destiny or the free
world?

1035
00:54:49,185 --> 00:54:51,947
And I didn't really understand the
question when she asked me that.

1036
00:54:51,947 --> 00:54:56,750
And it has been a question that I have
continuously asked myself over the last
year,

1037
00:54:56,750 --> 00:55:01,652
particularly and before. And it's this
idea of,

1038
00:55:01,652 --> 00:55:05,585
you believe that you are in control of
your fate or do you believe that there

1039
00:55:05,585 --> 00:55:08,776
is a wider, there is a larger purpose
that,

1040
00:55:08,776 --> 00:55:12,618
and I, up until Adelaide's diagnosis and
Adelaide's,

1041
00:55:14,052 --> 00:55:20,994
trauma, I have always been a believer of
the free world.

1042
00:55:20,994 --> 00:55:24,275
believed, no, I am absolutely in control.

1043
00:55:24,275 --> 00:55:28,996
And to a certain extent, we do have a
level of control that we can generate.

1044
00:55:28,996 --> 00:55:32,537
However, whether you're religious or not,

1045
00:55:32,537 --> 00:55:36,108
there are ways that you can't explain.

1046
00:55:36,108 --> 00:55:40,619
There are just inexplicable reasons that
things happen.

1047
00:55:42,327 --> 00:55:44,220
this felt very much like one of them.

1048
00:55:44,220 --> 00:55:48,037
And I can point to other points in my life
where it feels that way too.

1049
00:55:48,037 --> 00:55:52,846
And I think back to that interview
question and how differently I'd respond
now.

1050
00:55:52,846 --> 00:55:55,287
And yeah, I don't know.

1051
00:55:54,755 --> 00:55:55,755
Wow, I love

1052
00:55:55,597 --> 00:55:57,061
that question. I've never heard that
before,

1053
00:55:57,061 --> 00:56:00,911
but I like that. I wonder how a lot of
medical parents would answer that

1054
00:56:00,932 --> 00:56:02,135
if they would do it similarly.

1055
00:56:02,147 --> 00:56:05,707
Yeah, exactly. And you know, it's a hard
one because we are living in

1056
00:56:05,707 --> 00:56:09,167
a world right now where we trust,

1057
00:56:09,167 --> 00:56:10,887
we want to trust science as a,

1058
00:56:10,887 --> 00:56:14,447
a, you know, as a mother, I am a big
believer in vaccines and science

1059
00:56:14,447 --> 00:56:17,347
and all the rest of it. And at the same
time,

1060
00:56:17,347 --> 00:56:20,527
you can't help sometimes, but wonder like,

1061
00:56:20,527 --> 00:56:25,447
there must be a reason as to why things
happen and why things don't happen that

1062
00:56:25,447 --> 00:56:29,327
is out of our control. So it's like a real
juxtaposition in the medical world.

1063
00:56:29,327 --> 00:56:30,327
So.

1064
00:56:30,497 --> 00:56:32,098
Yeah, there can be space for both.

1065
00:56:32,643 --> 00:56:33,643
I agree.

1066
00:56:34,167 --> 00:56:35,967
Well, you mentioned a couple of times your
Instagram.

1067
00:56:35,967 --> 00:56:37,696
Where can people follow along with you?

1068
00:56:37,827 --> 00:56:43,687
Oh yes, yeah, if you do feel inclined to
follow...

1069
00:56:43,305 --> 00:56:44,305
And you should

1070
00:56:43,927 --> 00:56:46,932
because she's hilarious and adorable and I
love everything about it.

1071
00:56:47,212 --> 00:56:50,315
I will say it's not a cutesy lovely like,

1072
00:56:50,315 --> 00:56:53,098
love my children so much. Like sometimes
I'll post that,

1073
00:56:53,098 --> 00:56:56,871
but most of the time I'm just posting
about how challenging parenting is.

1074
00:56:56,871 --> 00:56:59,604
So I don't want to give anyone a false
sense of like,

1075
00:56:59,604 --> 00:57:02,777
this is going to be the most like
wholesome place because it's mostly

1076
00:57:02,777 --> 00:57:06,440
me just trolling my children. And
eventually it will get to a point where
they say,

1077
00:57:06,440 --> 00:57:08,682
thank you very much. I don't want to be on
camera anymore,

1078
00:57:08,682 --> 00:57:10,714
but right now Adelaide's really loving the
attention.

1079
00:57:11,256 --> 00:57:12,256
love it.

1080
00:57:12,193 --> 00:57:13,907
And it's, I'm just Tilly Aldridge,

1081
00:57:13,907 --> 00:57:16,252
at Tilly Aldridge on Instagram.

1082
00:57:16,252 --> 00:57:17,675
Yeah, you'll find me there.

1083
00:57:18,051 --> 00:57:20,244
Perfect. And then do you have a Pinterest
board we need to follow?

1084
00:57:20,961 --> 00:57:23,192
my God, I have a thousand Pinterest
boards.

1085
00:57:22,795 --> 00:57:24,011
Okay, okay, yeah.

1086
00:57:23,192 --> 00:57:24,762
Right now

1087
00:57:24,762 --> 00:57:27,693
I'm again, I'm Tilly Aldridge on
Pinterest.

1088
00:57:27,660 --> 00:57:28,660
Okay, great.

1089
00:57:27,693 --> 00:57:28,693
And

1090
00:57:28,994 --> 00:57:35,916
right now my world is about trying to find
outfits with

1091
00:57:35,916 --> 00:57:39,838
clothes that I own. So I type into
Pinterest,

1092
00:57:39,838 --> 00:57:42,739
like outfits for.

1093
00:57:43,029 --> 00:57:45,380
a Brooklyn mom going to work in tech.

1094
00:57:45,380 --> 00:57:49,091
Like you can be as specific as that now
and Pinterest and I'm not here

1095
00:57:49,091 --> 00:57:53,590
to like shout out Pinterest, but it will
pop up all of these amazing like outfits

1096
00:57:53,590 --> 00:57:56,093
where I'm like, okay, I have jeans sort of
like that.

1097
00:57:56,093 --> 00:57:57,864
I have a shirt almost like that.

1098
00:57:57,864 --> 00:58:01,155
And you can kind of piece together things
that you already own.

1099
00:58:01,155 --> 00:58:02,585
And I'm really trying to make

1100
00:58:01,985 --> 00:58:02,985
a good idea.

1101
00:58:02,585 --> 00:58:05,726
use of, yeah, I'm really trying to make
use of what I already have rather than
just

1102
00:58:05,726 --> 00:58:07,307
buying a coat.

1103
00:58:06,423 --> 00:58:07,575
I need to do my child

1104
00:58:07,575 --> 00:58:11,127
life podcaster from Austin, Texas who sits
in our office all day.

1105
00:58:11,127 --> 00:58:12,194
I need to find that one.

1106
00:58:12,598 --> 00:58:14,429
Yes, please do. do.

1107
00:58:14,529 --> 00:58:16,501
mean, look, comfort and style.

1108
00:58:16,501 --> 00:58:20,894
Yeah. It's so,

1109
00:58:17,975 --> 00:58:19,810
I love it. Tilly, so wonderful to meet
you.

1110
00:58:19,810 --> 00:58:20,810
Thank you for being here.

1111
00:58:20,894 --> 00:58:24,196
so nice to see you. And yeah, thank you so
much for having me.

1112
00:58:24,196 --> 00:58:26,538
And if anyone out there would like to
chat,

1113
00:58:26,538 --> 00:58:28,680
like they are very welcome to reach out.

1114
00:58:28,680 --> 00:58:30,923
am always here. Awesome.

1115
00:58:29,934 --> 00:58:30,934
Thank you.

1116
00:58:30,924 --> 00:58:33,766
Before you go, if this story taught you
something,

1117
00:58:33,766 --> 00:58:37,957
made you feel less alone, or helped you
better understand what families experience

1118
00:58:37,957 --> 00:58:41,679
in pediatric healthcare, would you help us
by passing it forward?

1119
00:58:41,679 --> 00:58:45,642
Podcasts like this grow because people
share them.

1120
00:58:45,642 --> 00:58:48,784
Send an episode to a friend, a neighbor,

1121
00:58:48,784 --> 00:58:52,257
another parent, or share it with a
Facebook group or community where

1122
00:58:52,257 --> 00:58:54,128
you think someone might need to hear it.

1123
00:58:54,259 --> 00:58:57,251
And if you haven't already, follow the
show and leave us a review.

1124
00:58:57,591 --> 00:59:00,593
it helps more families find these stories
and learn from the parents

1125
00:59:00,593 --> 00:59:01,994
who have walked this path before.

1126
00:59:02,115 --> 00:59:04,780
Thank you so much for listening to Inside
the Children's Hospital.

1127
00:59:04,780 --> 00:59:05,933
We'll see you next time.