I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors notice something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away, so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO.
On day 323, we were discharged from the hospital...just a few days before Landon’s first Christmas! What a treat it was to spend Christmas together outside of the hospital. And on day 355, Landon finally made his way back home to South Carolina! Just one week shy of his first birthday! Our journey is a long way from over, but we’ve come so far than the 35% chance of survival that we were initially given!
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.
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.
At 7 years old, now Breanne has beaten all the odds. She makes me a better mom and person everyday and never gives up, no matter the obstacle.
We truly believe Lucy Jane is our little miracle, and we know that God has used her and her story to share His love to a lot of people.
Jim Beau was on the ventilator for 13 days and on oxygen for about 30 days. Thankfully, Jim Beau was a model CDH patient. The nurses called him “the CDH baby who doesn’t know he is a CDH baby.”
At that moment, I did not care if my child was a boy or a girl; I didn’t care about my classroom; and I didn’t care how I was going to fit a baby into the mix. I was sad; I hurt, but I was going to fight. Julie did share with us we were having a boy, and Jon was so excited. His words were, “Yes! A football player.” My words, “I just want him to live.”
Emma is now 15 years old and a Sophomore in High School. She is doing extremely well all around! She plays on her high school’s JV tennis team in the fall and plays indoor tennis in the winter.
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.
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!
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.
I couldn't believe that this tiny baby who had been hooked up to all these machines & wires was going home with me.
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.
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...!!!
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.
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!!
I would never wish a CDH journey on anyone, but I'm so grateful for who our family has become because of it.
Jacob Dunford, 22 year old Development Director at Tiny Hero shares his perspective working with CDH families and kids.
Two roads diverged in a wood, and I – I took the one less traveled by, and that has made all the difference.
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These kids aren't survivors, they're heroes.
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.