Vincent’s CDH Story

After three years of trying to get pregnant, including three rounds of IUI and one miscarriage, Nicholas and Sarah were so excited to be pregnant with a baby boy on their first round of IVF and due in May of 2023. 

The pregnancy was as easy as it could be until January 26, 2023, the day we first learned of Congenital Diaphragmatic Hernia. We had a second anatomy scan at 24 weeks since they could not get pictures of his heart at the first one at 20 weeks. The doctor told us that his heart was pushed farther to the left than it should be, along with his left lung. This led the medical team to believe it to be a mass or possibly CDH.  We went through with the recommended MRI to confirm it was CDH (moderate to severe on the scale). Then, we completed genetic testing to rule out any other possible genetic issues. What we thought was going to be a quick appointment turned into four hours of confusion and sadness. 

That weekend was tough. We had planned to start decorating his nursery, but the emotional rollercoaster we were now on kept us from even walking into that room. We started in shock, then came a sadness we had never felt before, followed by hopelessness. But after a few days, we realized that this was not our story and it was not his story. Our typically optimistic outlook on things pushed through those emotions and kept us believing he was going to be okay.

At 31 weeks, we were told that there was a fetal growth restriction and that he would not grow much more. He was already approximately one month behind in size at this point. Sarah was admitted to the hospital for daily observations to determine when the best time would be for him to make his arrival. There was a fear that he may not survive in the womb much longer. But we also didn't want to bring him into the world much earlier due to his underdevelopment and the possibility of needing ECMO. We were weighing the pros and cons daily on when would be the best time to deliver him.

Vincent Alan was born on April 7th, 2023. He had right-sided, liver up CDH. He decided to come on his own at 34 weeks and one day. Sarah was able to have him naturally. He was 3 pounds 7 ounces. The hope was to get him to at least 4 pounds as soon as possible in case he needed ECMO. 

He was doing well on the ventilator until day ten. We were given a decision to continue on the ventilator; however, he would not make it much longer. Or they could try putting him on ECMO. The surgeons were not sure that he would be big enough for the cannulas for ECMO, but they were willing to try, as it was our only hope to save him. After over two hours of surgery, they were able to get his arterial cannula but were unable to use his venous line due to its small size and brittle structure. He had a sternotomy to complete the ECMO surgery in order to connect to a venous line. (This was never discussed with us as a possibility until he was already in surgery.) We were also told that he was the smallest baby to ever be put on ECMO at UNC.

He was on ECMO for two days when they completed his hernia repair surgery. Luckily, he had more right lung than originally thought. The liver was covering it up in ultrasounds. Because he was so small, they had to leave the wound open for a few days for the swelling to go down, which would require another surgery four days later. He was able to come off ECMO after only six days but required another surgery to close the open wound from the sternotomy. He was extubated on day 31 and slowly dropped oxygen support over the next 3.5 months. 

Vincent left the NICU after 133 days. He was on .2 liters of oxygen and a G-tube. He was unable to eat orally when he came home and was only able to be discharged by the hospital if we had a G-tube. Vincent began eating orally by taking a bottle at 9 months and was off oxygen completely soon after. 

At two years old, Vincent is thriving and has caught up developmentally to other kids his age. We are so proud of our Tiny Hero. His strength through all the surgeries and ups and downs of his NICU stay is unmatched by anyone we have ever met. We have also never met a happier kid. What a journey it has been for us with Vincent, but we are the luckiest parents to have him as ours.