Scarlett’s Story - Congenital Diaphragmatic Hernia (CDH)
The rollercoaster started on April 4, 2019. My husband, Eric, my 6-year-old son, Masen, and I went to get an ultrasound done to find out the gender of our sweet baby. But we left the appointment confused and in tears. Hearing that my baby had CDH was a term I had never heard of. So many emotions were running through my mind. A few weeks passed, and we were contemplating whether or not to have a gender reveal party. We went ahead and decided to do it! This pregnancy was extremely hard for me because the unknown was tearing me apart, but thankfully I had an amazing support system.
I couldn’t buy cute baby clothes or decorate her nursery because I didn’t know if she was coming home. At 30-weeks or so, we met with the NICU doctors and surgeons to give us more insight into what was coming. One of the doctors said that Scarlett had a 10% chance. That stuck with me daily, 10%, that’s it? I was breaking. At 33-weeks, I had to go to the emergency room, and I ended up having preeclampsia. The doctors came in and said the baby needed to be delivered now. My heart was racing. I had no time to soak it in. I researched CDH and read that most babies don’t cry when they are delivered, so I wasn’t expecting any crying whatsoever. I had an emergency cesarean section. And guess what, she cried!
They immediately intubated her and put her on a ventilator, and rushed her away to the NICU. Since I had preeclampsia, I had to stay in bed for 24 hours, so I couldn’t see her. Finally, after 24 hours, I was cleared to go see her, and she was so itty bitty I was so scared to touch her. She was only 4.3 pounds.
The first day and a half, she was in the conventional ventilator, but then her oxygen levels were not doing great, so they put her on the oscillator. The doctors wanted her off the oscillator before surgery could happen. She continued on the oscillator, and at 3 weeks old, she started having bad blood gas tests, which meant they needed to do surgery the very next day.
All the odds were against my sweet baby girl. She did really well through surgery and was stable. They were able to move all her organs down and close her diaphragm muscle. They did leave her abdominal muscles open to leave a little room for the intestines and just closed the skin. She also had a chest tube to drain fluid. 17 days after that, she finally got put on the conventional ventilator. She was doing great! And after 40 days, I finally got to hold my baby girl for the first time! And 3 days later, she got put on CPAP, which was awesome. She could cry again! She was hoarse at first, but every day she was improving. Over the next few weeks, she went from CPAP to low flow and back and forth. Finally, after 2 1/2 months of being in the NICU, she was getting released! One of the best days of my life! She did have to have oxygen (.25 %), which was almost nothing. She is now 14 months old and is off oxygen, and is thriving! She will be having surgery to close her abdominal muscles next week and hopefully won’t have any more surgeries. The time in the hospital felt forever but doing the research and talking to other people who had gone through CDH, and reading the stories on the Tiny Hero page helped me a lot! My baby girl is the strongest person I know!