Abel’s CDH Story
When I was 20 weeks pregnant, my OB noticed on the anatomy ultrasound Abel's heart was on the right side of his chest instead of the left side, and she wanted to send me to a specialist to obtain a more detailed understanding of Abel's anatomy. I then had more ultrasounds performed, unsure yet of the results. I was referred to Cincinnati Children's Hospital Fetal Care Center CCHMC) for further prenatal tests, including an MRI and Echocardiogram of my baby. I was one of their first patients, as the fetal care center was brand new at CCHMC. At this time of testing, I was 25 weeks pregnant. We met with my Neonatologist a few days later to discuss the test results.
My mom, husband and I walked into a conference room with seven physicians/nurses. My heart sank along with panic and fear. I knew something was wrong with my precious unborn baby boy. It was at this moment we could never forget the words, "We discovered the reason for your baby's heart to appear on the right side of his chest. I am sorry to advise you that your baby boy has left-sided Congenital Diaphragmatic Hernia (CDH)." Abel's small and large bowels, spleen, right kidney, and stomach were on the left side of his chest, pushing his heart to the right. During this conversation that felt like it lasted an eternity, I could only think of the words, "Your baby's rate of stillbirth and survival is 50%. He will be on a ventilator as soon as he is born and will be in the NICU for at least a few months." It was life-shattering to hear that 1 in 3,600 babies are born with CDH in the US, and we were one of those. Even though CDH is rare, it was very familiar to the physicians of CCHMC, which I was very thankful for. Due to the increased risk of stillbirth, I was induced at 37 weeks. My due date was February 2, 2022; however, I gave birth on January 13, 2022, my birthday!
Abel was the best birthday gift I could ever imagine asking for! After delivery, we moved into the Ronald McDonald House, which was within walking distance of the NICU. I did have a traumatic delivery, along with 25 nurses/physicians in my delivery room. I was only able to hold my precious baby for 20 seconds right after I delivered him; then, he went with the nurses to be intubated and hooked up to many lines. I didn't get to see him again until later that night. When the nurse said, "Okay, Megan, as soon as you can walk to the restroom, we will take you to the NICU to see your baby." I instantly got up so fast and started to walk as if there was no pain so I could see my baby!
Before I went to see him in the NICU, I got a call from the NICU nurse asking for my consent for a blood transfusion. This was one of three blood transfusions that Abel had to have within the first two months of life. Nothing could prepare me as a first-time Mom to see him hooked up to all the lines and the ventilator. We later discovered that Abel had a grade two brain bleed at the time of delivery due to the trauma I had with pushing, or it could have happened while I was pregnant. Abel had an unsuccessful PICC line placement attempt at two days old, but the next day, it was successfully placed. The PICC line, along with A-lines, allowed Abel to get the medications he needed, such as Fentanyl and Precedex, to help with sedation. Abel's CDH repair took place when he was two weeks old. During Abel's CDH repair, it was discovered he had two openings in his diaphragm. The pediatric surgeon repaired one opening with a Goretex patch, and the other he was able to use muscle and existing tissues to close the opening. Abel was born with a small belly as there were not many organs in the stomach, so during the CDH repair, his appendix had to be removed to allow enough room to pin down his intestines (large and small bowels).
We finally got to hold Abel in our arms for the very first time when he was two and a half weeks old! We were only allowed to hold him for a total of four hours each day, so when that time came, I wanted it to last forever! When my physicians said there are ups and downs of the NICU life, I didn't realize what they meant until I had to live that life. It always seemed like the bad days lasted forever, but if I could go back and tell myself one thing, it would be, "Keep your faith in God. There will be better days ahead that you never knew would be possible with your miracle baby — just wait to hear him laugh!"
Once I knew this was going to be my life as a CDH mom and that there would always be medical ups and downs, I realized it's all about how you handle each bump in the road. Being a mom of a child with special medical needs made me so much more grateful for ALL the little things and milestones of my son's life. Abel spent close to four months in the NICU until we finally got to take him home! He went home with an NG feeding tube and had that until he was 11 months old when we decided to go forward with the G-tube surgery. Abel still has feeding challenges, including silent aspiration and penetration with eating and drinking, pectus excavatum, and sensory issues. Still, he faces all his challenges with a smile on his face! We have a lot of doctor appts, but we're so blessed to have the best medical team on our side! My tubie baby is now two years old and is so smart, funny, and sassy. He knows some ASL and is always running around with a sweet smile on his face! People are so surprised when I tell them all that Abel has been through with his CDH diagnosis and survival odds. I want to let families that receive a CDH diagnosis know that you are NOT alone; there is HOPE, and the darkest of days will be bright again. Just keep your faith!!
