CDH Stories
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.
Noah's Story - Congenital Diaphragmatic Hernia (CDH)
He is now an active (almost) 10 year old who loves drawing, writing, and sports. He brings joy to every room he enters with his spunky and funny personality, and we pray that his story will help others facing the same diagnosis.
Par's Story - Congenital Diaphragmatic Hernia (CDH)
He is excelling in school and LOVES all sports—especially contact sports! His endurance is better than most kids his own age- he is an incredible soccer player and as luck would have it, he is pretty good at golf, too! We thank God daily for this miracle who is constantly talking, driving us crazy about college sports scores, and wanting to play outside 24/7.
Grayson's Story - Congenital Diaphragmatic Hernia (CDH)
Grayson was born at 38 weeks with a left-sided CDH, operated on at a day old, and spent 30 days in the NICU. No ECMO. He came home without a feeding tube and the need for oxygen. He basically sailed through the process like a rock star!
Christian's Story - Congenital Diaphragmatic Hernia (CDH)
He had decided on a name for him as well: Christian Peter, which means strong rock. He then handed me a picture of our son that was taken by a very nice volunteer with the March of Dimes. I clung on to this picture for the next 24 hours as I lay in my bed, unable to visit my sick baby boy.
Leo's Story - Congenital Diaphragmatic Hernia (CDH)
I couldn’t believe this was happening to me. I cried for weeks. I couldn’t look at babies, kids, or other pregnant women without my heart breaking.
Trenton's Story - Congenital Diaphragmatic Hernia (CDH)
No ECMO was needed, and he continued to thrive. He was a little slow with feedings, but finally picked it up. I was able to hold him for the first time 2 weeks after he was born. I also was able to pump the whole time he was in the hospital, so he received it via tube and then bottle once we got to that point.
Kennedy's Story - Congenital Diaphragmatic Hernia (CDH)
Kennedy's corrective surgery was at 5 days old. There was enough diaphragm left to sew it together instead of using a patch. She did well but struggled with eating and reflux. At one month old, a feeding tube was placed and a Nissen procedure done. We left the NICU and headed home at 2 months old. 7 surgeries later and 11 years old, we are beyond grateful...!!!
Stephanie's Story - Congenital Diaphragmatic Hernia (CDH)
Steph is now 22 and beautiful, with no apparent side effects at all. We were told she would never be able to burp. Oh boy were they wrong!!
Ian's Story - Congenital Diaphragmatic Hernia (CDH)
As he grew older, he became sick less often. Ian grew with no physical restrictions. He played soccer and basketball when he was younger, would ride his bike and skateboard, swim and go surfing. He would get more winded than some children when he would run long distances, but there was never anything he wanted to do that he couldn’t.