"My son did not cry—but he was beautiful." - Par's Story
"An active, smart, caring 11 year old" - Leo's Story
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.
"For the first time in a while I had hope." - Darci's Story
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.
"Kennedy...a life they said wouldn't be worth living"
Within a day, I was on the phone with Joy Perkins, she was calling my daughter by her name which is Darci and making me feel as though they would do whatever they could to help her.
"She doesn't let CDH get in her way" - Savannah Grace's Story
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 to Dr. Kays and his team!!!
"22 and Beautiful" - Stephanie's Story
At two months old, I was bringing my baby girl home. She is now a very playful, smart, and active 6 year old. She doesn't let CDH get in her way.
"I didn’t talk or eat, just waited." - Joseph's Story
Steph is now 22, beautiful with no apparent side effects at all. We were told she would never be able to burp. Oh boy were they wrong!!
"A million questions started flooding our minds" - Logan's Story
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.
"One of three little miracles" - Emily Grace's Story
Our family is much larger than just the three of us. Going through this journey, the CDH community has been so supportive, they've become family.
"Jude surpassed all the odds against him" - Jude's Story
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.
"Lilly showed us what a fighter she was!" - Lilly's Story
We got to hold our son for the first time when he was 17 days old. The rest passed in a blur, which was good for us because it meant no major hiccups. Jude surpassed all the odds against him, had no feeding issues other than moderate reflux, and after 37 days in the NICU we were able to bring our miracle home.
"I’ve never seen so many doctors and nurses in one room" - Noah's Story
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 and by seeking out Dr. Kays I gave it to her.
"Excelling in school and making the most of her life" - Kira's Story
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.
"If you didn’t know what she had been through, you would never believe it." - Finley's Story
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 a healthy active boy and a 1st Degree Level 2 Black belt." - Trenton's Story
The CDH rollercoaster is rough, but you just have to keep your eyes on the prize: taking your baby home. After 134 days, she left the hospital on oxygen and after having the nissen procedure and a g-tube placed. One of the best parts? Her exit MRI showed no brain damage!
"He can’t seem to walk anywhere, it is always a jog." - Christian's Story
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.
"Gifted student and gaming enthusiast" - Grayson's Story
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.
"Every single month, every single season she shows improvement." - Anya Mae's Story
My son is more than just thriving, the possibilities are limitless for him!
"CDH has not defined him." - Austin's Story
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.
"A different path filled with hope" - Ethan's Story
In eleven years, some of the memories from the NICU have faded. We have a reminder of Tug’s beginning of life through a scar that remains on his chest. However, the gift we have been given through Dr. Kays’ care is a son who is not afraid to be his own unique self.
These tests would give a pediatric surgeon better understanding of our child's severity to help us make the best decision for our son.