CDH Stories
Evelyn's Story - Congenital Diaphragmatic Hernia (CDH)
As her strength and endurance built, she increased her feeding to the point that she no longer needed the feeding tube (which ran from her nose to her intestines). Her mommy and daddy are so proud of what a fighter she is and how determined she is to live!
Charlie's Story - Congenital Diaphragmatic Hernia (CDH)
We were very excited but also nervous about the health of our baby. It wasn’t our focus, but strangely enough, it was always in the back of our mind.
Caleb's Story - Congenital Diaphragmatic Hernia (CDH)
He’s 6 years old, has a blue belt in taekwondo, and enjoys swimming, singing and reading. We’ve lost count of the number of people that say there’s something special about him… but we know there is. He’s a CDH survivor.
Dakota's Story - Congenital Diaphragmatic Hernia (CDH)
She is now a healthy, happy, perfect 7-year-old. She's smart, kind, observant, and has a gentle soul. She is our miracle and our joy!
Jaxson's Story - Congenital Diaphragmatic Hernia (CDH)
He also endured many complications during his 92-day NICU stay. At 7 days old, he had an intestinal perforation; at 3 weeks old, he suffered a pulmonary hemorrhage; and at 2 months old, he had a horrible infection. We know that it is because of God and the skills he has given Dr. Kays that we are able to enjoy our son and watch him grow, despite all the challenges he faced early on.
Logan's Story - Congenital Diaphragmatic Hernia (CDH)
When we had Logan, our family became much larger than just the three of us. Going through this journey, the CDH community has been so supportive. They've become family.
Hazel's Story - Congenital Diaphragmatic Hernia (CDH)
Hazel had her repair surgery at 9 days old. Dr. Kays said her hole was huge. She had a full right lung and a nub for a left lung. He told us how Hazel really was a unique one. She ended up being bi-lateral, which is obviously the worst case, but had the best type of hernia to have a Morgagni hernia (an opening through the front instead of the back).
Finley's Story - Congenital Diaphragmatic Hernia (CDH)
The CDH rollercoaster is rough, but you just have to keep your eyes on the prize: taking your baby home. After 134 days and having the Nissen procedure and a G-tube placed, she left the hospital on oxygen. One of the best parts? Her exit MRI showed no brain damage!
Samuel's Story - Congenital Diaphragmatic Hernia (CDH)
There is no protocol, and there are no timelines during this whole process. It’s a lot of sitting, waiting and monitoring. As a mom who has her life "planned to a T," this was very hard from me to understand.
Lilly's Story - Congenital Diaphragmatic Hernia (CDH)
I can also tell you that I owe all of the precious memories I made with Lilly to Dr. Kays and Joy. I know that I would not have had that time with her if Dr. Kays had not treated her. It also feels good as a parent to have the knowledge that I did all I could for her. She deserved the best. By seeking out Dr. Kays, I gave it to her.
Ethan's Story - Congenital Diaphragmatic Hernia (CDH)
We still needed more information before choosing our path. These tests would give a pediatric surgeon a better understanding of our child's severity and help us make the best decision for our son.
Claire's Story - Congenital Diaphragmatic Hernia (CDH)
Claire goes to weekly physical and occupational therapy which has focused on developing her core strength and combatting any gross motor delays she has due to the stroke. She has made tremendous progress and is meeting most milestones!
Makenna's Story - Congenital Diaphragmatic Hernia (CDH)
Makenna went through a lot in her first 18 months. But none of it matters, because she had a caring team on her side. She is a CDH survivor. She can talk, walk, and is truly exceptional! She runs around everywhere, and is one of the happiest kids I have ever met.
Adam's Story - Congenital Diaphragmatic Hernia (CDH)
We can hardly believe it’s been 9 years since Adam made his grand entrance into this world. As many of you can relate, at birth, Adam couldn’t make any noise voluntarily because of his very severe CDH. We have had so many ups and downs over the years, but despite the rockiness of the climbing, keeping our eye on his upward progression has kept us moving forward with hope!
Tripp's Story - Congenital Diaphragmatic Hernia (CDH)
The first year with a child born with CDH is hard, challenging, and very overwhelming at times. But these babies come here fighters and they are extremely strong.
Anya Mae's Story - Congenital Diaphragmatic Hernia (CDH)
She loves Doc McStuffins and says she wants to be a "Baby Nurse" when she grows up. She is the complete opposite of what the original doctors said. She is not neurologically damaged. She is a survivor.
Abigail's Story - Congenital Diaphragmatic Hernia (CDH)
I remember turning to my husband and saying, "I hope nothing's wrong." Then, the doctor came in and greeted us. She was very sweet! She told us she was going to look at the picture then tell us what she was seeing.
Emily Grace's Story - Congenital Diaphragmatic Hernia (CDH)
We have such a strong family to have made it through all of this!! We are a military family and the triplets were born in Columbia, SC.
Joseph's Story - Congenital Diaphragmatic Hernia (CDH)
We were devastated. I can remember sobbing all the way home and my husband holding it together until he talked to his dad. When he said, “Dad, it’s not fair” and his voice broke, I could have ripped my heart out.
Kira's Story - Congenital Diaphragmatic Hernia (CDH)
My daughter was born november fifth 2009. She has Left CDH, her lung only matured to 25% on the left side. She was at shands UF for four months six days.