Lincoln’s Story - Congenital Diaphragmatic Hernia (CDH)
David and I learned we were expecting a baby in the fall of 2019. We felt nervous, and then those nerves turned into excitement. Our growing family meant doing one of our favorite, most meaningful things for longer.
In January, we went in for our anatomy ultrasound. My only concern that day was whether an extra baby was hiding in there since my morning sickness had been so bad, and we have a history of twins! We were hoping for a boy to even our family’s gender ratio. When the ultrasound technician revealed a boy, we were elated! We thought nothing of it at the time, but she kept going over certain areas and came back in to take some “extra pictures.”
After the ultrasound tech was finished, the perinatologist came in and said he saw something “abnormal” with our baby. He said that Lincoln’s heart was shifted to one side, and he suspected a Bock Dalek hernia. When we heard “hernia,” David and I weren’t too worried. A hernia didn’t seem so bad! As the doctor continued to talk about the effects, and the conversation shifted to whether we wanted to continue the pregnancy, it became clear that it wasn’t “just” a hernia.
Google didn’t have better news for us. Babies with CDH had tiny lungs, pulmonary hypertension, additional defects, and overall survival of around 50%. If Lincoln made it at all, he would need to be born at a hospital that could provide the highest levels of life support. We were devastated.
It didn’t take long for us to begin researching anything and everything we could about CDH. We began with online support groups, which led us to Tiny Hero. After reading the stories of other CDH families, we knew there was hope. We narrowed our options and began scheduling consults with healthcare teams that we thought may save Lincoln’s life. We used the list of questions supplied by Tiny Hero to guide our interviews.
On the day of our second consult, the spread of COVID-19 in the United States became breaking news, and restrictions began going into place. Our 3rd and final consult with Dr. Kays at Johns Hopkins All Children’s Hospital was by phone due to our concerns about the safety of air travel. Even by phone, we instantly felt connected with him. He took the time to thoroughly explain what he saw on Lincoln’s ultrasounds and told us what we could expect if we chose his team for Lincoln’s care. He believed in Lincoln. We had no idea how we would do it, but we knew we had to get there.
We relocated to St. Petersburg, Florida, at just shy of 35 weeks pregnant after a pre-term labor scare in Virginia. We didn’t have time to worry too much about logistics. After our local hospital stopped my contractions, we packed our things, made arrangements for our 3 older children to stay with family, and drove for 14 hours. When we arrived in St. Petersburg, it felt like everything would be okay. Fortunately, Lincoln stayed put, and we were able to spend a few weeks getting to know the team in Florida and some other amazing CDH families who had relocated from all around the country for care.
On Tuesday, May 26th, 2020, Lincoln was born by scheduled induction. Dr. Kays and his team were waiting for him and immediately started working to stabilize him as soon as he arrived. Lincoln needed a lot of support but was able to get through the first few days without going on ECMO. We shared the ups and downs of Lincoln’s journey with family and friends on a Facebook group. It gave us strength to know that our support network was rooting for Lincoln and our family!
Lincoln had his CDH repair surgery at 6 days old. Dr. Kays found that he had moderately severe right-side CDH with 60% liver up and 25% lung volume. He used a Gortex patch to repair the hole and did a Ladd’s procedure to reposition Lincoln’s intestines. He recovered from surgery, overcame ventilator-associated pneumonia, and had his breathing tube removed at 15 days old.
Lincoln seemed to be on the fast track to recovery until we hit a bump in the road at 23 days old. On one of the scariest mornings of our life, Lincoln became inconsolable, could not catch his breath, and was reintubated. After 3 long days of watching him struggle, his overnight physician placed a chest tube to drain fluid from around his lungs. They determined that the fluid was IV nutrition from his PICC line coming from a leaky vessel. Replacing his PICC line solved the problem, and he was extubated again within a week.
Eating and consistent weight gain were the final hurdles Lincoln had to overcome before he could come home. This leg of the journey was a true test of endurance for all. Fortunately, Lincoln was great at breastfeeding and did not have too much trouble with reflux. Due to COVID-19 visitor restrictions, only one parent could be in the hospital at a time. I was staying at the hospital nearly around the clock to breastfeed while David was with the bigger kids. Sometimes, it felt like there was no end in sight!
On July 20th, Lincoln met his goals for feeding and was discharged from the CDH Unit of Johns Hopkins All Children’s Hospital. A few days later, he arrived in Virginia and met his big sisters and brother for the first time. Now, at 3 months old, Lincoln is absolutely blanketed in love by his family every day. He is our miracle.
2020 has been a year like no other. Having a CDH baby in the middle of a global pandemic sounds like a riveting fiction novel. God works in mysterious ways, and this journey of a lifetime has challenged our whole family to reimagine what’s possible in life. Having Lincoln home with us makes every sacrifice worth it. To other families beginning their CDH journey, you’re stronger than you know!
