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.Read More
“When they first told me She had it, I had never heard of it and didn’t even knew how to pronounce it. This awfully horrid defect I’d never heard of quickly changed our world and became something I would need to live with each day.”Read More
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.Read More
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!Read More
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.Read More
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.
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.Read More
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.
Friday morning I got the call from Joy! “We’re coming to get Jackson.” Dr Kays decided to make the trip to Baltimore at the tail end of a nor’easter to transport my critical baby on ECMO back to JHACH.
On 1-18-18 Braxton arrived and wow did we fully understand the importance of being with Dr. Kays. Braxton crashed on day 2 and went on ECMO. He had his CDH repair on day 3 and after 7 days of Ecmo he was off.Read More
We were so excited to be expecting our first baby. Everything had been so perfect until a 30 minute ultrasound turned into an hour and half. I knew something was wrong, but all they would tell me was they couldn’t get the pictures they needed. Once we met with the doctor we learned he had a Diaphragmatic Hernia.Read More
A parent’s worst nightmare is hearing something is wrong with their child. Our sweet unborn baby had been diagnosed with a Congenital Diaphragmatic Hernia (CDH). Casey and I had never heard of this before.Read More
After coming home, Colt has thrived. He was cleared by cardio. He's gained weight like a normal baby would. He's on normal well baby visits without weight checks in between. At 5 months old, he's already sitting up on his own.Read More
I just did not know what to do. Even though my doctors seemed confident that Lucas would survive, I knew I would never forgive myself if I didn't get him the best care possible and something happened.Read More
At 7 years old, now Breanne has beaten all the odds. She makes me a better mom and person everyday and never gives up, no matter the obstacle.Read More
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.Read More
Today, he is thriving with the assistance of a feeding tube. He needs no oxygen support. He is pure joy, a happy and sweet little boy. We love him so much.Read More
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. IRead More
Jameson only needed a feeding tube for a week at home and has since continued to blow many doctors away with his amazing progress! He will soon be celebrating his 2nd birthday. Jameson has been and continues to be the light of our lives.Read More
Dr. Kays spent 3 nights at her bedside doing everything possible to keep her off ECMO. He informed us that she was a lot sicker than we anticipated and was not improving much, so on day 4 he decided to do her repair surgery.Read More