Ethan's Story - Congenital Diaphragmatic Hernia (CDH)

Our son, Ethan Wyatt, is a thriving 2-year-old who fills our lives with joy! He was born at 38 weeks on February 16, 2015 at 2:10pm, weighing 7lbs 3oz and was 21 inches long. People who stare into his captivating blue eyes and his charming smile find it difficult to believe that it was recommended we terminate our pregnancy after learning of his congenital diaphragmatic hernia (CDH) during our 19-week level 2 ultrasound. 

We had just watched our baby dance, wiggle, flip, turn, yawn, and wave. We had counted its fingers and toes. We had learned the gender of our baby to be a boy, and there we shared with his grandparents and aunts the name we had chosen for our son, Ethan. We were celebrating this beautiful life, and then the doctor came into the exam room. 

She was the same doctor I used when I needed a second opinion about my first pregnancy as we lost our first son during labor at 40 weeks 2 days. He was stillborn. After our loss, we went through testing and counseling and lots of waiting. Only to be told that they couldn't find a reason why we shouldn't try to have another baby and that the only cause they could find for the death of our son was that it was a cord accident. Skipping ahead, we decided it was time to start trying again to conceive. It took longer than we had hoped for me to be with child, but were blessed to finally hear that I was pregnant. However, it was a rough start. Between 8-12 weeks, there was some minor bleeding-which I couldn't help but be in fear of a miscarriage. By the time our baby was just 12 weeks, we had already had 3 ultrasounds. Then for one month it was bliss; I was happily pregnant with a baby. There were few doctor's appointments, no bleeding, and no scary instances. So when we stood there at 19 weeks, hearing of our son's diagnosis of CDH and that he was unlikely to survive or have much of a life, I was completely devastated. I couldn't hold back the tears. This was going to be yet again another very tough road no matter what path we chose. 

We had two paths to choose from. One of them was to terminate our child which was pressured by only having a few weeks to make that decision before the law wouldn't allow us to choose that path. The other was continuing with the pregnancy knowing that our child may die before he's born during the third trimester or be born but have little chance of survival. I felt very confused. What is more humane? Do I choose to end his life now or do I let death find him on his own? I didn't want to choose either of these paths. I wanted a different path: one filled with hope, not a predetermined destiny of death. 

And so we opted for more testing, starting with an amniocentesis immediately after our learning of his diagnosis. Then we scheduled a fetal MRI and awaited the results of the micro and macro genetic testing. During the little time we had to think, there was one decision I had come to make and that was I knew I would never be able to forgive myself for taking the first path. I would have always wondered what if. I knew I couldn't live with that. We still needed more information before choosing our path. These tests would give a pediatric surgeon a better understanding of our child's severity and help us make the best decision for our son. 

That's when we found an amazing CDH specialist that had the answers no other doctors or Google had. His name was Dr. David Kays. We asked him our questions no one else could answer. We wanted to know about survival odds specifically for our son and what his quality of life would be if he survived. After meeting Dr. Kays, we chose to continue with the pregnancy. He provided the hope we needed, our third path.

We then turned our focus on preparing our life for this battle our son would have to fight. We immediately confronted our bosses with the news and our plans. My boss was very supportive; however, my husband's boss couldn't be. Their business couldn't support us. This was hard to take in. To give our son the best possible outcome meant my husband would lose his job, our bills would literally double, we could lose our house due to inability to pay, everything we own might need to be sold to provide us with cash-flow, and the potential that my work could let me go if my FMLA time expired leaving us without any income or health insurance. In the pursuit to save our son, we could potentially lose everything and still not have a son to hold dear. However, we decided to take the risk, stand up and fight. And fight we did. 

We continued with our high risk pregnancy care in our local area until 8 weeks pre-due date, then we transferred care to the OBGYN team that worked closely with Dr. Kays. We moved 2.5 hours away from Riverview, FL to Gainesville, FL within a block of the hospital 2 weeks prior to the induction date. I delivered Ethan at 38 weeks 2 days, as scheduled. 

When he was born, his stomach, spleen, small and large intestines, and 30% of his liver were in his chest cavity because only 5% of his left diagram formed. The plan was to have his repair surgery 16 hours after birth, as he was a very sick little boy and the sooner he could have the repair surgery done, the better. 

In less than 12 hours after he was born, we received a phone call to come down and see our son, as this may be the last time we see him. He was doing very poorly and wasn't going to make it to his scheduled repair surgery. They had run out of all other options and Ethan's only chance for survival was ECMO. Immediately, he was put on ECMO. 

Slowly he started getting better and better. As soon as Dr. Kays could, he performed Ethan's repair surgery on ECMO at 3 days old. Performing this surgery while he was still on ECMO is extremely risky. For the ECMO machine to be able to pump the blood, it needs not to clot, so blood thinners are given. During surgery, one wants the blood to clot, so the patient doesn't bleed out. It was a risky surgery, but Ethan was so sick that he wouldn't have made it off ECMO to have his repair surgery. If he never would have had his repair surgery, there literally would be no chance of him surviving. Other doctors wouldn't dream of performing this surgery while a patient was on ECMO, and I wholeheartedly believe that if Ethan had been in their care, he wouldn't be here today. 

Ethan spent 8 days on ECMO, 35 on the ventilator, and it was 36 days before I could hold him for the first time. He spent a total of 10.5 weeks in the NICU until he came home. 

At 4 months old, Ethan was eating primarily by mouth, and we weren't needing to use the G-tube often. At 6 months old, Ethan was discharged from supplemental oxygen. At 11 months old, he learned to sit without support. At 14 months, he learned to scoot on his bottom to get around. At 17 months, Ethan took his first steps into Dr. Kays' arms during a routine clinic visit and his G-tube was also removed during the same visit. At 18 months, Ethan began full on walking. At 24 months, life was totally different; what CDH?! Ethan was completely caught up in nearly every area and was like every other 2-year-old just on the small size. At 28 months, Ethan was discharged from all of his specialists except for Dr. Kays, whom he sees annually. He was also evaluated at a 6+ year old cognitive level as a 2-year-old! He knows all of his letters, his numbers, and has an immense vocabulary. We are currently working on reading and math. His successful cognitive advancements couldn't have been possible without Dr. Kays' successful ECMO program with his ability to preserve the brain from suffering brain damage. 

Our lives are forever changed and filled with amazing joy. We have a very happy boy who is really just a normal kid. We didn't lose our house. I didn't lose my job. We didn't have to sell all of our possessions. Family, friends, and complete strangers financially carried us through. God provided. He knew the way. We just needed to listen and follow his direction. For his plan was the best plan. 

My plea for you is to choose the path to provide your unborn child with the best care possible. I beg you to explore all possibilities on the table especially one leading you to Dr. Kays. If I knew then what I know now, the path to take would have been simple: get my child to Dr. Kays. When we met with Dr. Kays at 19 weeks, Ethan had no liver up and his prognosis was very good. But as the pregnancy continued more and more organs shifted up. No one could have known how sick our child was. However, we chose the path with the best possible care for our child having any severity. That choice saved our son. There wouldn't have been enough time once he was born to move him. You need to think of all possibilities. What if your kid is even sicker than the doctors predict? Will your baby be in the best care? 

We'd be happy to talk with you. Please contact us at amandawyatt2@gmail.com. 

-Chris and Amanda Wyatt