She actually SCREAMED. We were told that wouldn’t happen. We were told she might not seem responsive or have any of the normal “just born baby” things. But she cried.Read More
And so, Dayly received the infamous CDH “line” as she now calls it. The scar that includes her in a special club of survivors.Read More
We discovered that her liver was up and very large, her spleen was in her shoulder and “everything wanted to be up in the penthouse,” as our brilliant surgeon, Dr. Arca, put it.Read More
After twenty-eight days in the hospital, we were able to go home. I know that stay seems so short compared to some, but I am so thankful how amazingly well he did and continues to do! Max will be 2 years old next month and has never had any other health issues.Read More
Lucy Sofia may have had to wait 31 days after birth to be embraced by family and friends, but the truth is, she has captured the hearts of many from day 1. She is a testament to how even the frailest can empower; the tiny can have a huge impact.Read More
After 37 long, stressful, emotionally paralyzing, heartbreaking but awe-inspiring days later, our baby girl was discharged and able to come home!Read More
Every day there was less medication and less oxygen. She eventually came home at 51 days old. No oxygen and feeding orally. SHE DID IT!
He is now 8 months old and I'm talking about what to plan for his 1st birthday. I hope you find hope and comfort in his story. He still has challenges, but we are bravely fighting them one day at a time. And always remember slow and steady wins the race.Read More
The high-risk ultrasound is a blur to me now. I don’t recall much of the conversation with the doctor after either, except for when I was asked if we wanted information on terminating the pregnancy. Typing that sentence out physically takes the breath out of me because of the amazing little boy that we now have in our lives.Read More
We got to remove the oxygen on his first birthday, which was the best birthday present ever! With the help of many therapies, Harlan is now a thriving 15-month-old with a constant smile on his face who cruises everywhere, eats everything by mouth, and babbles up a storm.Read More
Before our appointment with maternal fetal medicine the following Monday, we gave him a name - Bennett James - we wanted everyone to know that no matter what we were told at that appointment, he was important, and he mattered.Read More
I hope by sharing Camden’s story that another family will read it and realize that you don’t have to settle for 13%. Our 13% just turned a year old and is doing amazing!Read More
The overwhelming support of family, friends, employers, and the CDH community coupled with many, many miracles sprinkled throughout the next five months enabled us to relocate from California to Florida in preparation for Micah's arrival. God’s hand was so evidently involved in every step of the way.Read More
Xander is an amazing kid. He's smart, funny, compassionate, and kind. He loves to run, loves to be outside, and wants to be farmer when he grows up.Read More
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
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.
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.