RealTalk CDH: CDH Round 2

In this episode of Real Talk: CDH, we’re joined by Carry Me Health to discuss the importance of mental health support for families navigating a CDH diagnosis. From the emotional weight of the Diagnosis, the NICU to the ongoing impact beyond it, this conversation offers validation, insight, and encouragement — reminding parents they don’t have to carry it alone. 💙

Our topic today is one that is near and dear to every CDH parent’s heart — innovation in CDH care, ventilation strategies, and reducing the need for ECMO. Dr Suneetha Desiraju joins us to explain the strategies she employs at Johns Hopkins Baltimore and the wonderful outcomes she is seeing.If you’ve had a child on ECMO, then you know all too well the fear, the weight, and the heartbreak that can come with it. So any advancement that helps lessen the need for ECMO is something worth talking about.

On this episode I chat with Dr. Wendy Chung, Chief of Pediatrics at Boston Children’s Hospital and founder of DHREAMS, the longest-running CDH research study. Dr. Chung shares what DHREAMS has uncovered, how families can get involved, and answers listener questions in this insightful and hope-filled conversation.Whether you’re a CDH parent, family member, or supporter, this conversation offers hope, knowledge, and a reminder that research is paving the way toward better understanding and brighter futures.

Join us as we hear from CDH dads Tom Polizzi and Jordan Casey. Both have walked through the heartbreaking loss of a child to CDH—at very different points in the journey. They share openly about grief, hope, and the unexpected beauty found in the hardest moments. 💙

On this episode I speak with Roxanne's mom Erin. She shares her journey from pregnancy to diagnosis and from bringing her baby home to an unexpected loss. You may shed a tear but you will also be so unbelievably proud of the legacy Roxanne's mom is creating in honor of her daughter's fight against CDH.

Join us as I speak with Jordan Casey, Victoria Casey and a fellow CDH mom Angela Morse about the IEP process. We discuss your rights as a parent and the appropriate language to use to ensure your voice will be heard as you advocate for what is best for your child. There is an accompanying powerpoint that can be found here: https://docs.google.com/presentation/d/1PuRvwokZFcU_sXp06qvtHtbwkAEYrwxa/edit?usp=sharing&ouid=115294528082836604297&rtpof=true&sd=true.

Ashley Ebanks, nurse practitioner (NP) from the pediatric surgery care team at Children's Memorial Hermann shares some helpful tips regarding care coordination, even answering the difficult questions surrounding when to call your pediatrician and when to call your surgery team.

We’re thrilled to welcome Dr. Matthew Harting from Children's Memorial Hermann and the University of Texas, in Houston TX. This episode is a must-listen for every family who has ever faced the daunting questions: “Where should we deliver our CDH baby?” “How do we choose the right care team?” “What questions should we be asking?”Dr. Harting brings expert insights, compassion, and clarity to one of the most critical decisions families can make on their CDH journey. Tune in, feel supported, and get empowered with the knowledge you need.

On this episode 2 CDH loss mamas share their journeys of loss and the difficult decision to try again. Whether you have lost a child to CDH or you know someone who has this episode is for you. Kirby and Sarah share with raw honesty what was helpful, what was not so helpful and everything in between. You will smile and you will shed a few tears, but ultimately you will be in awe of the strength and resilience of these two mothers and the bond they will always have with their babies.

Listen in as I chat with Kelsey White, CDH Mama X 2. Kelsey shares her unbelievable journey that includes being a mommy to CDH Angel Avett and CDH Survivor Anders. Kelsey has faced the worst thing imaginable not once but twice and has come out with the most beautiful outlook on life. You will be blessed, I know I am.