Ethan's Story - Congenital Diaphragmatic Hernia (CDH)
The day my boyfriend and I found out we were pregnant, we were so excited. We began talking about all of the things we would now do as a family of three. We talked about names and room decoration ideas. We talked for hours about everything you would normally talk about when expecting a beautiful baby. One thing we didn’t talk about was how long we’d be staying in the hospital. Or how many medications our baby would be on, or how many surgeries our baby would require. We never expected for those to be the things we laid in bed discussing when it came to our baby.
I was 28 weeks pregnant when we went in for a routine ultrasound. We were expecting nothing but positive feedback and pictures of our little guy, but that is far from what we got. I can just remember looking over to the ultrasound tech and seeing her smile turn into this very concerned look. She didn’t make eye contact with me and then headed for the door while saying “I’m going to get the doctor, just stay put. “ In that very second, I knew something was wrong. I was confused because every ultrasound up until this one had been fine, or so I thought. My heart was pounding and my hands were sweaty. The five minutes it took for the doctor to come in and speak with us were the longest five minutes of my life. When the doctor finally came into the room she explained to us that Ethan had something called CDH. She told us that the survival rates for this condition were extremely low, and she said that she wanted to speak with me alone. I walked back to her office with her and sat down, she put her hand on my knee, looked me in my eye and said, “I can schedule you for an abortion if you’d like.” I couldn’t help but cry. I had been feeling my baby kick and twirl around inside of me for weeks, and I just didn’t understand how someone could ask to take away his life in a matter of seconds. My answer was of course NO. I asked for recommendations to specialists who would be willing to fight for our son. I was willing to go anywhere to save my baby. She said she didn’t really know anyone to recommend for CDH, but she could write a referral for us to see a pediatric cardiologist at Nemours Children’s Hospital, due to the fact that his heart was pushed over to the right.
Once we scheduled the appointment at NCH we knew it would be the first of many appointments with specialists during our pregnancy. I remember meeting with this doctor for an amniocentesis, and he had no idea that Ethan had pretty severe CDH. He saw our ultrasound and the minute he noticed the CDH, he told us about this doctor friend that he has, Dr. Kays, who is one of the best in the country when it comes to saving babies that have CDH. I felt like he was an angel sent from heaven because we had done so much research and we felt as if we were getting nowhere with finding the absolute BEST care for our little guy. He let us know that he wouldn’t recommend someone who he wasn’t completely sure was capable of helping our son. It was so reassuring to hear his kind and encouraging words.
We first met with Dr. Kays and Joy Perkins on August 17th, 2017. During our consultation, we were told that Ethan had left sided CDH with his stomach, spleen, small and large bowel in the chest with approximately 20% of his liver up. But, for the first time we were told that he had a 95% chance of living and that the team would do everything they can to give Ethan the best fighting chance. We were told he had a high chance of needing ECMO. We were overcome with joy to finally have someone on our son’s side. To finally have someone value his life and say that they will do whatever possible to ensure that he would live.
Ethan was born on September 13, 2017 via C-section with no complications at Johns Hopkins All Children’s Hospital in St. Petersburg, FL. The OR was quiet and everyone seemed to be in place and ready to help our boy. He was intubated within the first few moments of his life and was taken to the CVICU immediately after. I will never forget when they rolled him past me while I was laying on the OR bed, and Dr. Kays held him up and said, “Meet your little guy, Mom! Congratulations.” That was when I knew that Ethan was in good hands because for the first time I had a doctor congratulate me on the blessing that is my baby. It was the best feeling in the world to know someone was fighting alongside us to do whatever possible to save our baby.
Ethan’s first night in the hospital was a rough one, and the next morning, we were told that he would have to be put on ECMO. Whilst on ECMO, Ethan had his CDH repair surgery at just 2 days old. He did extremely well and there were no complications during his repair. He came off of ECMO after 10 long days. One month after his repair, Ethan remained stable enough to finally transfer to the NICU where he would be extubated and put onto CPAP. During this transition, we were sure he would recover quickly and be able to come home, but then we encountered the hurdle that is his VSD. He required heart surgery to repair his VSD in December of 2017. The heart surgery set him back quite a bit. He began to spiral in a very wrong direction. Requiring intubation, very low stimulation, and lots of medications. It was some of the hardest days of our lives, but we continued to have hope because we knew our little boy had the will to live.
In late January of 2018, we began to try new and exciting things with Ethan, such as breast feeding and bottle feeding, but it turned out he wasn’t ready for those things just yet. He didn’t want anything in or near his mouth, so that resulted in the placement of his G-tube and Nissen fundoplication. After his G-tube and fundo is when Ethan started to excel. He began to work with PT, OT, and FT to help him work on all of the fun baby things he missed out on whilst being so sick in the first few months. Everything was going smoothly, and we were so excited for what was to come (possibly going home?), until one day Ethan began having lots of not so good symptoms. He became extremely swollen and he wouldn’t make eye contact with anyone, he would just blankly stare. We were worried he was having seizures, so he was monitored on an EEG for 48 hours. Results of the EEG showed that there were no signs of seizures, so it made things a little more complicated. No one could put their finger on what was wrong, especially since the symptoms were so out of nowhere. After lots of X-rays it was discovered that Ethan had an obstructed bowel. We were told he would require another surgery, which broke our hearts so much, considering he had just started getting a taste for what it was like to play and be a baby. Even so, we held onto hope and knew that surgery was the best and only option to fix it.
Ethan underwent surgery to relieve the obstructed bowel on February 3rd. After that, he got much worse than anyone expected. For about a month, he was extremely sick, and we ran into many problems. Ethan required so many platelet transfusions for spontaneous bleeding or platelet counts less than 50,000. It was a very scary time for us as a family, but no matter how scared we got we knew he was in the hands of the people who could offer him the best care there is. Our hope still stood strong.
April of 2018 is when Ethan began to show tremendous improvement. He began to show us that he was ready to experience life outside of the hospital walls. The month was full of developmental improvement, lots of laughter, love and good times. The end of May is when Ethan was finally able to graduate from the NICU! At just about 9 months old, our boy was able to come and be in the home that had been waiting all those months for him. We were over the moon excited. We are thankful for everyone on his team that worked so hard to encourage him to keep pushing forward and giving him the best care possible.
Since Ethan was first discharged, he’s been in and out of the hospital, for sometimes months at a time, for many different reasons. He has overcome every obstacle in his way, and even though I know we still have a long journey ahead of us, I’m proud to say that up until now, our son has shone his brightest light through it all. He’s 18 months old now, and he is the best he’s ever been. Our tiny hero rocks!
