"She’s currently in physical therapy and speech therapy, doing the things that my prior MFM said she would NEVER do!" - Kennedi's CDH Story

She was placed on ECMO at less than an hour old and had her repair surgery was done at 6 hours old while on ECMO.  She stayed on ECMO for 13 days.  95% of Kennedis’ left diaphragm was missing and Dr. Kays said her lungs where so small they were nonexistent. 

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"After receiving the CDH diagnosis, we were advised to consider termination, so we left the appointment with little hope and with no direction. " - Scarlett's CDH and CHD Story

Despite her setbacks and despite undergoing open-heart surgery, she is a healthy, happy baby. She shows no signs of pulmonary hypertension, is off oxygen support, and is off all medications related to CDH, despite having been born with only 20% of her left lung.

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“He knows what his abdominal scar means and what Dr. Kays means to him. We are so blessed and thankful for every day with our Tiny Hero!” - Aiden's CDH Story

Even after all Aiden has been through he is still a bright, sweet, imaginative and inspirational little boy! We have talked to him numerous times regarding CDH and his surgery. He knows what his abdominal scar means and what Dr. Kays means to him. We are so blessed and thankful for every day with our Tiny Hero!

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“Caleb is now a 17-year-old high school honor student who is musically talented and a varsity baseball player." - Caleb T. CDH Story

We went home with more questions than we had going to that appointment. In a short amount of time, we learned what we could about this life-threatening birth defect. We also learned that Pediatric Surgeon Dr. David Kays had one of the highest survival rates in the world for a congenital diaphragmatic hernia repair.

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“Griffin is a living miracle, but the road to recovery is not going to be an easy one.” - Griffin's CDH Story

Griffin was born a fairly healthy baby on May 30, 2016. All he had was a small heart murmur and jaundice. After a few days in the hospital we went home and were ready for the world with our healthy son.


We had never heard of CDH before July 10, 2016 when Griffin was 6 weeks old. That day has forever changed our lives, and we remember it perfectly. 

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“We watched our daughter go through more in her first year of life than some people do in a lifetime, but yet she never let CDH dull her sparkle.” - Logan B. CDH Story

If I could give any advice to CDH families it would be to stay positive and no matter how hard it may be, never lose hope. And to reach out for support, every story is different, but we’ve all been through the emotional rollercoaster.

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“To most outsiders, CDH is ‘limiting’, but for me, it is the complete opposite. My CDH drives me to do well in school…” - Angel's CDH Story

To most outsiders, CDH is ‘limiting’, but for me, it is the complete opposite. My CDH drives me to do well in school, and because I was lucky enough to have an amazing doctor like Dr. Kays, I am able to pursue all of the things that I love to do, things that most people would be surprised that I am able to do.

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Tuanny's CDH Story - LCDH

Tuanny is now a year old, already had his annual check up with Dr. Kays, and has done extremely well at home. He battled through a few colds and had a bad bout of stomach flu and an ER visit but reached some great milestones:  rolled over at four months, crawled around between six and seven months, and has been scaling the walls and walking with assistance since eight months.

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Drew's CDH Story - LCDH

So, there we were, over the moon watching every beautiful movement our little baby made on the screen. He said “Its’ a boy!’ as he continued to scan. I kept wondering what the black hole that he kept labeling “ST” was. It was near his heart, and I didn’t remember the heart being so narrow on baby scans. I

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