Real Talk 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.

On this episode I talk with Kristin and Tom Polizzi, parents to CDH Angel Charlie and Founders of Charlie's Warrior of the Angels. You will laugh and you will cry but mostly you will be in awe of these to amazing people. They have endured unimaginable tragedy yet they still find ways to bless others all while honoring their warrior son and his battle against CDH.

On this episode I talk with Nicoletta, CDH mom and founder of Healthcare Redefined. As both a CDH mom and a board certified patient advocate Nicoletta understands the overwhelming feelings of this diagnosis coupled with an extensive NICU stay and care coordination between multiple specialists. She shares how her company could help you navigate this journey!

On this episode I chat with Dr Keijzer who is a pioneering researcher in the field of pediatric surgery and congenital anomalies, with a particular focus on congenital diaphragmatic hernia (CDH) and abnormal lung development. His cutting-edge research delves into the mechanisms of normal and abnormal lung development due to CDH, with the ultimate goal of developing a prenatal therapeutic intervention to improve the outcomes for babies born with this condition. Dr Keijzer shares his research and even answers the questions I know are bothering all CDH families when we first get diagnosed... Did I cause this? What could I have done differently?...

Join us as we hear from Jami, Shepherd's mama as she get's real about CDH, trach's and postpartum depression/anxiety. You will laugh, you will cry and you will be so glad you listened.

This episode is all about FETO. We hear from 3 moms who have asked the hard questions, done the research, had the procedure and are excited to share their journey with us all.

Continuing with our series on tough questions we are talking about the tough questions parents ask themselves when they are first told their child has CDH. These are questions that maybe you were too embarrassed or even ashamed to ask. Maybe you were thinking you were alone in asking them or maybe you just didn't feel comfortable sharing these thoughts with anyone. Well we are here, 3 CDH mamas with 3 different perspectives and 3 very different journeys getting real with it all in the hopes you feel validated, encouraged and ultimately a little less alone as you navigate this journey!

On this episode we hear from Brianna Fullmer, mama to CDH Angel Reagan and founder of the Reagan Valeria Foundation. We smile, we cry and we laugh uncontrollably because though this is a story about loss it is first and foremost a story about hope.

In this episode I talk with Savannah Lopez Sotomayor about her beautiful angel baby William Joe. I laughed and I cried, sometimes at the same time as Savannah shared her loss journey. She gets real with her feelings, sharing openly about what helped her process Williams passing and what did not. She also shares the phenomenal ways she has found to keep his memory alive. You won't want to miss this!

Listen to CDH mama Sasha White share her journey with her son, CDH survivor Luka. Sasha shares her story from diagnosis, to wrestling with hospital choice and transfer.

Today we are talking with Shannon Connor, mama to CDH angel Molly. Shannon shares her journey with grief, the amazing friendships she has found along the way and the new venture she has taken on in honor of her CDH warrior.

In honor of heart month we talk with 2 CDH mama's who share the incredible story of their children's extreme ECMO journey's. This includes the longest ECMO run for Dr Kays at JHACH as well as ECMO cannulation directly into the heart... These stories are the extreme of the extreme but both of these kiddos are living proof that there is always reason to hope!

In this episode we chat with 2 veteran CDH and G-tube mamas about their child's journey from CDH diagnosis, G-tube placement to home. They share the ups, downs and in-betweens of the tube feeding journey and provide some practical advice for parents. For more information on tube feedings visit: thecdhfoundation.org/resources

Join us as we chat with Taylor Steffensmeier, CDH survivor and mama of 2. Taylor will share her story of undiagnosed LCDH, ECMO, multiple re-herniations and much more.

On this episode we speak to Ashton Roach a Clinical Mental Health Counselor who has a passion for helping those experiencing grief, life crisis, and somatic (body) symptoms related to trauma. Loss is a part of life that everyone experiences, let's talk about it and remove the stigma surrounding loss and grief.

With Thanksgiving upon us it seems fitting to discuss an issue often faced by children with CDH, eating/feeding difficulty. Join us as we hear from feeding therapist Karen Dilfer MS, OTR/L, C/NDT. Karen discusses the "get permission" approach to feeding therapy and offers helpful tips for parents as they seek new ways to encourage their tube fed children to eat. The resources discussed by Karen can be found here: https://drive.google.com/drive/folders/1U-7JMRbImJtl0Z6Ro9-HPMVTHLiI_y1C?usp=drive_link

Join us as we talk to 3 moms who have lost children to CDH. They get real with their grief and answer the tough questions surrounding loss.