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).

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!

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.

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.

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 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 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.

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!

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.

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.

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.

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.

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.

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.

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.

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 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!

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.

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.

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.