Jasper’s CDH Story

I had no idea my son had CDH until after he was born. During my pregnancy, my MFM noticed something was not quite right on my ultrasound at 34 weeks. She diagnosed it as dextrocardia and referred us to a pediatric cardiologist who looked at everything and said that was not the case but that the heart was shifted over and she wasn’t sure why. My MFM, after that, told us she didn’t know what was going on but that something was off and that the pediatrician could figure it out after he was born. I was induced at 38 weeks due to intrauterine growth restriction (IUGR) and had no idea what to expect. My labor was quick, just two hours, and during pushing, his heart rate began to drop. Once he was out, they saw the cord wrapped around his neck twice, and he came out blue, but they were able to get him breathing and his color back quickly. Fifteen minutes after birth, he struggled to breathe again, and they were, once again, able to get him back on track quickly. I asked them to look over him and told him what the MFM said, and they said they would do an ultrasound in a few hours and that he was fine. Four hours after labor, he seemed to be okay. He started to cry this very strange cry. I tried to nurse him, but he couldn’t and appeared in extreme pain. I noticed his skin looked bruised, and he was purple. I called the nurse who took him, called a NICU nurse, and they took him immediately back to the NICU. They said they would run some tests and see what was going on. I was thinking maybe because he was born with the cord around his neck, it was due to that, or maybe from him being born so quickly, he had some fluid in his lungs and that he would be back in with us soon.

An hour later, the NICU doctor came in and told us he had a congenital diaphragmatic hernia (CDH) and that he would have to be sent to a NICU an hour away for better care and surgery, and that he would be in the NICU for a while. I had never heard of this and didn’t even know it existed, so I was terrified. Soon after, they took us to the NICU to see him. He was intubated, which was heartbreaking. They transferred him quickly and I discharged myself not even 12 hours after labor to go and be with him. When we got to the next hospital, the head doctor explained everything and the statistics. I was terrified. They said that they would not know exactly how bad things were until they got in there to do the surgery, but they were hopeful because of how long he was able to breathe on his own after birth, with no one knowing anything. They did his surgery at two days old, and they found there was only the intestines up and that the hole was small enough that they could sew it, so he did not need a patch. He was extubated four days after his surgery and immediately went to room air. He was in the NICU for a total of three weeks. Joining Facebook groups and hearing all the positive stories gave me so much comfort and hope in the scariest time of my life, and hopefully, I can do that for others by sharing his story. He’s now two months old and doing great!