Legacy’s CDH Story
In 2012, during a high-risk pregnancy with my first child, I went in at 22 weeks for my gender determination ultrasound, only to learn that my son’s liver was in his chest cavity. We learned he had a Congenital Diaphragmatic Hernia.
His was a very severe case, and as my pregnancy progressed, his prognosis grew worse. While he was originally diagnosed as a case of right-sided, liver-up CDH, he did not develop much of a diaphragm at all. Week by week, all his organs gravitated into his chest cavity. We prepared ourselves for a long hospital stay if he survived birth. We knew that we would likely need to relocate to ensure the best level of care for him and our family. We were told that he would need to be placed on ECMO if there was any chance of him surviving. Having already chosen his name, I realized that we had one choice before us: to fight for Legacy.
I went into labor too early for Legacy to be placed on ECMO and was hospitalized at a different location than he would be born to stop my labor. After another three weeks, I went into labor again, and it was go time! Legacy was supposed to be born via exit emergency C-Section, which is a procedure where they place him on ECMO while he is still attached to the umbilical cord. Still, when they put me under, his numbers dropped so severely that they delivered him as quickly as possible so they could intubate him. I will never forget his surgeon waking me up and asking if I wanted to see Legacy, me crying, yes. The team rolled a warming bed in front of me, and then two huge walls of machines. No conversation prior to his birth could have prepared me for that.
Legacy was a whopping 9 pounds and 6 ounces at birth. All of his abdominal organs were in his chest. He had one lung the size of a peanut and the other was the size of a pecan. Additionally, he had some malformations in his heart. He was given a 20% chance of survival on the day of his birth. Fortunately, he was allowed to go on ECMO a week early. Remember, I was at a different hospital, and I was going crazy not being near him. On day 2 of life, I had this feeling, a “mommy vibe,” to put it best, so I called his father to come to get me to see Legacy. I had to fight with my medical team to be allowed to leave. My C-section had not been without its own challenges. After threatening to discharge myself altogether, they gave me permission if I promised to stay in a wheelchair the entire time. We arrived at the hospital to find the NICU lobby full of people, which didn’t even register as strange, though it was. We went straight back to the pod Legacy was in to find it was closed to visitors due to a child having an emergency procedure. I raised my concerns at the front desk until a nurse suddenly came out of the doors. She saw me, then turned around and came right back out with a fellow of his surgeonS. They informed us it was, in fact, Legacy who was having emergency surgery. My mama instincts were right! Because of a problem with his hernia repair surgery and an injury on day 24 of life that required him to be taken off of ECMO emergently, his chances of survival were lowered to 10%, and things weren’t looking good. But we knew Legacy had the fight in him to keep going.
Every day was a new challenge, with ups and downs all along the way. There were times when even the practitioners felt there was nothing more they could do for Legacy, but we would come up with a new plan. We tried music therapy, holding him, having a big say in when interventions would take place, and, most of all, loving him as best we could. The reality was always there that he may not survive. Still, because of this, we celebrated every day we had with him. We celebrated all his milestones — even the first time he pooped (he would desaturate to 0 each time)! We celebrated when we finally were able to hold him. When he was getting an actual room and no longer in the pod. Every surgery he made it through. Wearing clothes for the first time. Getting his trach. Literally EVERYTHING!
Along with relocation, over 26 surgeries, medical procedures, and interventions, our family resolved to fight for Legacy. And after ten months of being hospitalized, Legacy was able to come home to a virtual hospital room with 24/7 nursing, a tracheostomy, a feeding tube, oxygen support, lots of medication, and more surgeries and procedures to come. Ultimately, I am so glad we did. Because of our unrelenting fight for Legacy, his 10% chance of survival has resulted in him recently celebrating his 10th birthday! There are some secondary issues due to being highly medicalized and desocialized. He is on the Autism spectrum and has ADHD. But most importantly, he is the happiest, most joyful, and most amazing kid you could know!
I share these details to say that even under the direst circumstances, there is HOPE! Yes, there is pain, grief, and fear of loss, but there is always HOPE!
Ultimately, our experience as a family has led me to a new passion for offering coping support to other families struggling with the same challenges. I desire nothing more than to help families figure out what I had to figure out over a vast span of time and very much on my own — how to cope with it all! I hope that my story helps you as well!
