Caregiver Stories Episodes

It's a moment that many parents on this podcast have talked about. Your at your ultrasound, pregnant with your child, and all of a sudden the mood of the room changes. Either the technician leaves, or a doctor walks in to "take a closer look" … a million questions and thoughts and fears run through your mind. In today's episode, you will get to hear from Jade Marie from Portsmouth England. At 16 years old and after being told she could never have children, Jade Marie was shocked to learn that s...

After a long fertility journey and a high risk, stressful, and very sick pregnancy, Stephanie gave birth at 26 weeks due to severe preeclampsia. Stephanie, mom to Adeline, shares her experiences in the NICU and describes Addie's difficulty with digestion. A long road of unknowns eventually led to a diagnosis of functional short bowel syndrome. Stephanie shares her perspective about important topics like how having a child with an "invisible disease" can be a blessing and a curse, how she actuall...

Belinda, a mom, certified child life specialist, teacher and creator of ChildLifeConnection.com shares her story with us today on the final episode of season two of the Child Life On Call Podcast. As a cancer survivor herself, Belinda knew that she wanted her life's work to positively impact hospitalized children and thus she became a Child Life Specialist. After getting married and having her first child, she applied her knowledge of child development and expertise with children to her own son...

At Alex's 20-week ultrasound appointment, she and her husband learned that their daughter, Lucy, had heterotaxy and congenital heart defects. From that moment, their lives changed and they became advocates and fighters for their spunky daughter who is now one year old. In this episode, Alex talks about Lucy's birth, surgeries, hospitalizations and ER visits. She talks about how their cardiologist became one of their biggest champions and what a difference the congenital heart defect online comm...

Sarah shares her experience with a son who acquired a common called RSV and how it eventually led to pneumonia and being hospitalized for a week. We talk about some of the hardest parts of being in the hospital like waiting for a diagnosis, not being able to cuddle your child who is hooked up to oxygen and IVs, and trying to find ways to cope cope as a mother during the experience. Sarah discusses about how this entire experience has changed the way she looks at health, being aware of spreading...

At just 25 weeks pregnant, Courtney was diagnosed with pre-eclampsia and was hospitalized. Just 5 days later and after a terrifying emergent c-section, she would meet her daughter, McKenzie. In this episode Courtney talks about her entire experience from her own hospitalization and her daughter's 5-month stay in the NICU, and eventually going home. She talks about the balance of being a single, working mom and the struggles that come along with having a child with medical needs. Courtney will le...

Meredith, a nurse and mother of two, describes her experience as a new mom and what happened when her five-week-old had a fever. After several tests in the ER, she and her family learned that their new son had meningitis. Meredith talks about what their ER and hospital was like with a newborn. Two years later and after suffering from several sinus infections and sleep apnea, her son underwent a tonsillectomy and adenoidectomy. Meredith talks about how they came to the decision to move forward w...

Torie is a young adult with gastroperesis. Torie's journey has been a long one which includes a car accident, receiving total nutrition through an IV, NOT EATING FOOD FOR AN ENTIRE YEAR, and being told her illness was related to anxiety. These things, however, don't even touch the tip of the iceberg when it comes to what Torie has been through. Eventually with the help of the device and taking control of her invisible illness through being diligent and sticking to a "Torie-Friendly Diet," Torie ...

Today's episode features two women. First, we will hear from Alexis whose son went through a fairly common surgery, ear tubes, and she will talk about what their experience was like. However, as child life specialists and parents we know thate despite how "common" or "routine" a surgery may be, those words don't begin to cover all the emotions and experiences that come along with these "common" surgeries. You can follow Alexis through her business or her blog. As a part of celebrating child lif...

In honor of March and the fact that is Child Life Month, this episode features Shani Thornton from Child Life Mommy. Shani shares her entrance into the child life field and how she chose to move forward in the field as a community-based child life specialist. Along with being the author of the children's book "It's time for your check up: What to expect when you're going in for a doctor's visit," Shani is a big voice in the child life world as she has her own blog and shares valuable resources...

In this first episode of the second season of this podcast, we hear from a self-proclaimed "crunchy granola mom" Nina, whose fourth child was born with what she calls "a funny shaped head." Nina goes on to describe her son's first few weeks of life and her appointments with her pediatrician and an osteopathic doctor. With little to no help from the osteopathic doctor, she trusted her instincts and returned to her pediatrician who then referred her to a surgeon at Children's National Medical Cen...

This episode closes out Season 1 of the Child Life On Call Podcast. This podcast went from a dream to a reality thanks to the help of the all the courageous families who came forward to share their stories about having a child with medical needs. Season 1 covered the spectrum in illnesses, diseases and conditions, and all episodes had a similar theme: children are resilient and teach us more about the world and ourselves than we could ever imagine. Katie gives life updates and talks about her n...

At just six years old, Susan's son began complaining of belly pain along with other alarming symptoms. After a trip to the doctor, they were quickly sent to meet with a Pediatric Gastroenterologist and would eventually learn the news that one of her sons, Preston, had Crohn's disease. Susan shares personal details about their journey, procedures, and treatments that are associated with Preston's experience with Crohn's. She discusses how she and her family cope with living with this disease. Sus...

Episode 10 features an interview with Roxanne, a mom of three from San Antonio, Texas. Just after entering high school and an outstanding performance in a football game, Roxanne's eldest child, Rueben, began having high fevers and flu-like symptoms. After about a week, his parents found him having a seizure and rushed him to the emergency room. They would soon learn that Rueben was diagnosed with viral encephalitis. Roxanne tells the story of their stay in the Pediatric ICU, what it was like bal...

Episode 9 features an interview with Liz and Jamie. Shortly after Jamie was born, she developed a heart murmur and began passing out. Her mom, Liz, walks us through what it was like to witness such terrifying scenarios and how she began to become an advocate for her daughter. Despite being told that nothing was actually wrong with Jamie, Liz pushed harder and demanded tests that led them eventually to her diagnosis, Tetralogy of Fallot, a rare and serious heart defect. Years after the surgery t...

Episode 8 is Part 2 of Mandy and Nolan's story. If you haven't listened to Part 1, head on over to Episode 7 so you have a better understanding and appreciated for Mandy's story. I mentioned that Nolan was scheduled for surgery and I'm sure you're interested in an update… and this is directly from Mandy: The doctors were able to perform a scope of his airway to identify the obstruction that is causing the apnea; however, after getting a closer look at just how constricted his airway is, they dec...

Episode 7 features the first part of Mandy's story. Her son, Nolan, was born five weeks early with a host of symptoms which led them to find that he was diagnosed with a condition that only four other people are currently living with. Nolan is the ninth person in the history of medical science that has been diagnosed with Mandibuloacral Dysplasia Type B (Mad B). In part one of Mandy's story, she talks to us about how doctors and specialists eventually came to diagnose Nolan. It ended up being an...

Episode 6 features Tricia, a mama who lives in the southwest suburbs of Chicago. Tricia bring a unique perspective and understanding of child development in her experience based on the fact that she has her masters in early childhood development and education, is currently an adjunct faculty member at Depaul University and is also a doula. In this episode, you'll hear Tricia talk about the fight of a lifetime to find a diagnosis for her daughter, Cora, who is now 13 years old. After four and a h...

Karen had a typical pregnancy up until the last few scary days when she was unable to feel her daughter move. After following her mother instinct, Karen went to the hospital and quickly learned she would need an emergent c-section. As emergencies go, everything was unexpected. In this episode, Karen walks us through what her daughter's birth and subsequent NICU stay was like. She talks about the unknown's of her daughter's health as well as how difficult it was to be away from her in those first...

After arriving at her 20 week ultrasound, Abigail, her husband and mother were anxiously awaiting to hear the news of their first child's gender. However, the appointment took a turn when they learned that their son would be born with Spina Bifida. Abigail talks to us about that experience and their journey since that life changing moment. They'd come to learn that their son also had hearing loss and she talks about the challenges associated with it. Abigail expresses her feelings about Teak's ...

In this episode you will hear Kim talk about her experience in finding out that her son had Microtia Atresia, the interesting link to their family history and how that has affected her journey, and the tough decision about how and when to move forward with surgery. Microtia is a congenital deformity where the external ear is underdeveloped, and Atresia is the absence or closure of the external auditory ear canal. The malformation of the middle ear bones may be affected including the narrowing of...

Michelle's story is one that took place over 15 years ago, and this is the first time she has spoken about it publicly. At the age of two, Brynn started developing inexplicable fevers which concerned her mother, an Emergency Room nurse. After trusting her gut that "something was wrong," Michelle brought her daughter in the middle of the night to the ER and shortly after was diagnosed with meningoencephalitis and in a coma for over a week. Michelle brings a unique perspective on relationships wi...

After a long pregnancy on hospitalized bedrest, Kelli describes the birth and first year of her twin girls, one of which was born with two genetic conditions, Caudal Regression Syndrome and Goldenhar Syndrome. The journey to diagnose these conditions was a long one, and Kelli talks about what that process was like, and what is like to have a child with these two syndromes. Kelli recommends a several resources, www.isacra.com and the Goldenhar Syndrome Facebook group. Kelli also recommends raredi...

This is the first promotional episode for the Child Life On Call Podcast. If you would like to share your story, email us at childlifeoncall@gmail.com, visit our website at www.childlifepodcast.com, or find us on Instagram @childlifeoncall. The first official podcast episode will launch in June 2017. Subscribe to be updated on our most recent episodes.