Real Talk CDH

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.

Resources

Books:

"The Grieving Brain." - Mary-Frances O'Connor, PhD

"Bearing the Unbearable." - Joanne Cacciatore, PhD

"The Wild Edge of Sorry." - Francis Weller

"Finding Meaning: The Sixth Stage of Grief." - David Kessler

"How to Carry What Can't be Fixed." - Megan Devne

Websites:

www.whatsyourgrief.com

Instagram Account:

GroundedGrief

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.