Inside the Children's Hospital

Latest Episodes:

Episode 25 | Meredith Howell's Story - a daughter with a rare genetic condition (BBSOAS) Apr 04, 2019

Show notes

Meredith, mom to now 8-year-old Lola, shares her experience with her daughter who was diagnosed with Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) shortly after she was three-years-old. However, their story didn't begin there.

As an adventure, Meredith talks about how she and her husband moved to Costa Rica from Indiana after they were married. Lola was born there and shortly after birth, her mom began having questions about her health and development. From infantile spasms to possible lissencephaly (smoothing of the brain), they searched for answers and were eventually led to the NR2F1 gene mutation which explained many of Lola's symptoms.

Meredith gets real in our conversation about the ups and downs associated with having a child who is legally blind and has developmental delays. She talks about her own struggles and how she finds balance being a working mom.

If you would like to connect with Meredith, you can send her an email or find her on Instagram and Facebook at Say Hola Lola.

Please rate and review this podcast on iTunes so that it makes it easier for other parents and listeners to find us.

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Episode 24 | Jade Marie's Story - A daughter with hypoplastic left heart syndrome Mar 26, 2019

Show notes

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 she was 16 weeks pregnant. At at an emergency ultrasound less than 24 hours later, she learned that the baby inside of her had one of the most severe heart defects - she was missing the entire left side of heart.

In this epsidoe, we will hear Jade Marie describe what the journey with her daughter, Dawn Louise, has been like and what it is like to have a child with hypoplastic left heart syndrome.

Instagram: @DawnLouise_HLHS

Facebook: Dawn-Louise HLHS Blog

YouTube: Archer Adventures

UK HLHS Support: Little Heart Families

Listen to and read about more stories from parents of children with an illness or medical condition here:

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Episode 23 | Stephanie's Story - A daughter with functional short bowel syndrome Mar 18, 2019

Show notes

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 actually felt relief when they received Addie's diagnosis, and how she handles tough to answer questions from well-meaning friends and families.

Stephanie talks about how she has been an advocate for her daughter and fought for a diagnosis, and how she continues to fight to give her daughter the best care possible and her family travels every 4 to six weeks to Boston from Baltimore to get Addie around and in front of experts in the field. Listen to Stephanie's story on the Child Life On Call Podcast.

Follow Stephanie and Addie: @addie.belle + She Got Guts

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Episode 22 | Belinda's Story - A son with low muscle tone, epilepsy and autism Apr 30, 2018

Show notes

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 when she began to notice that he wasn't developing typically. You will get to hear how Belinda has used goal-setting and other self-motivating tools to help her son accomplish things doctor's said he never would.

Belinda will also talk about her son's autism diagnosis at the age of five as well as an epilepsy diagnosis a few years later. Belinda has helped her son in so many ways and has great advice and suggestions for parents facing similar challenges. If you would like to connect with Belinda, you can email her, or connect through her website and Facebook pages.

Episode 21 | Alex's Story - A daughter born with congenital heart defects and heterotaxy Apr 23, 2018

Show notes

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 community has made for them.

Alex recommends the poem Welcome to Holland and the Mended Hearts organization for parents going through similar situations. If you'd like to connect personally with Alex, you can do so on Instagram or Facebook.

Alex would like to share Lucy's diagnoses:

Heterotaxy: right sided stomach, midline liver and gallbladder, mirror lungs, asplenia. Congenital heart defects: complex Single ventricle with: complete unbalanced AV canal defect, hypoplastic left heart, double outlet right ventricle, total anamoulous pulmonary venous connection, pulmonary atresia, and bilateral superior vena cava.

Episode 20 | Sarah's Story - A toddler hospitalized with RSV and Pneumonia Apr 16, 2018

Show notes

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 germs, not taking for granted the small moments in life like a cuddly or clingy toddler and being aware of what really matters in life.

Sarah shares tips from how to support a toddler for a week-long hospital in addition to the recovery period at home. She also talks about how one night nurse completely helped make their hospital experience so much better.

If you would like to follow along with Sarah you can find her on Instagram and Twitter. Thank you to Janet Anderson Photography for the beautiful pictures of Sarah and her family. Go book Janet Anderson Photography today!

Episode 19 | Courtney's Story - A daughter born at 25 weeks Apr 09, 2018

Show notes

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 leave you feeling inspired and in utter awe of how she loves and supports her daughter.

Courtney recommends Preemies - Second Edition: The Essential Guide for Parents of Premature Babies Helping Your Child with Extreme Picky Eating: A Step-by-Step Guide for Overcoming Selective Eating, Food Aversion, and Feeding . If you'd like to connect with Courtney you can find her on Facebook, Instagram, Twitter or on her blog.

Thank you to Laura Morsman Photography for the beautiful pictures of Courtney and McKenzie.

Follow along with this podcast on Facebook, Instagram and Twitter.

Episode 18 | Meredith's story - A newborn with meningitis and a Tonsillectomy and Adenoidectomy at 2 years old Apr 02, 2018

Show notes

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 with surgery and how she helped Joshua through his experience.

Episode 17 | Torie's Story - A young adult with gastroperesis Mar 26, 2018

Show notes

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 has been able to eat food and live her life in a way that brings her joy.

Torie is currently a child life intern living in New York, pursuing her dream of becoming a child life specialist. Torie attributes her positive coping to keeping a grateful attitude, the help of her family and friends, and the people she's met along the way that she refers to as "spoonies." Torie recommends G-PACT, the Feeding Tube Awareness Foundation, The Spoon Theory, and social media to helping connect her with others going through similar experiences. You can connect with her on Instagram.

Torie's optimistic and positive perspective on life is infectious, and we are honored to have the opportunity to hear her story. To follow along with this podcast, follow us on Instagram, Facebook or Twitter.

Cochlear Implants and Severe Hearing Loss in Newborns Mar 19, 2018

Show notes

When Lyndsey's newborn daughter failed her initial hearing screening, she wasn't too worried—her older son had also failed the first test. But after a second failed newborn hearing screening, Lyndsey was referred to an audiologist, where she learned her daughter had severe hearing loss. What followed was a journey of emotions, decisions, and hope as her family explored treatment options, including cochlear implants.

In this episode, Lyndsey shares:

The newborn hearing screening process
How she learned about her baby's severe hearing loss
What went into the decision to move forward with cochlear implants
What the five-hour cochlear implant surgery was like
The moment her daughter heard her voice for the first time
Their work with auditory verbal therapy (AVT) after implantation
The support she received from Texas Hands & Voices and other hearing-loss resources

This is a powerful and emotional parent story for anyone navigating:

newborn hearing screening failures
pediatric hearing loss diagnoses
cochlear implant evaluation
auditory verbal therapy (AVT)
resources for families of children with hearing differences

If you'd like to connect with Lyndsey or have questions about any part of her journey, email podcast@childlifeoncall.com and we will connect you.

A special thank-you to Laura Morsman Photography for the beautiful family photos featured with this episode. Austin families—be sure to book her for your next session.

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Links and Resources:

SupportSpot Website
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Meet the host:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

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