Henry's CDH Story - LCDH - Liver Up - ECMO Survivor

Henry CDH ECMO survivor

Going into labor on December 23rd was an absolute dream. I was 5 days overdue, and I was thrilled to have a baby home for Christmas. Every ultrasound and every doctor told me my baby was healthy. After 22 hours of labor, my sweet Henry Reed came into the world. It felt like life was complete until Henry wouldn’t take his first breath. I was reassured by a nurse that if they thought he was going to die, they would have taken him out of the room. Right after those words were spoken, they rushed him out, and for 20 minutes, I thought my baby had died. 


A doctor came in and told me Henry’s organs weren’t where they were supposed to be, and the flight crew were on their way to take him to Seattle Children’s Hospital. I was taken to his room, and he was intubated. He looked weak and tired, but he had been born fighting, and he was stable. When the flight crew got there to take him, I told him goodbye and that everything would be okay and was then I was taken back to my room.


Three hours later, I was woken up by a nurse asking if I wanted to go see Henry before he left. He was supposed to have left three hours prior, so I was very confused but said yes. When they took me back to see him, I wasn’t prepared for what I was told. Henry had coded, multiple times, they didn’t think he’d live long enough to get to Children’s. I was given the option of sending him with a 5% chance of survival and risk him dying alone or I could hold him while he passed. I had to send him, it was never an option for him to die.


As a hemorrhage risk, I was asked by doctors to stay until morning. I said goodbye to my son for the second time, was taken back to my room to mourn my baby, and wait for the call of whether or not he survived transit. An hour later, he had made it. 


The morning of Christmas Eve, my family and I had to wait in town for the call when they asked for permission to put him on ECMO. Driving over the pass risked not have cell reception, and every second counted for Henry. After giving consent, we drove through the pass during a snow storm and got to Henry. It was late at night, he was hooked up to ECMO, his machines were very loud, and he was completely sedated. 


Henry CDH ECMO survivor

Doctors didn’t want to trial him off of ECMO until his body recovered a bit from the damage that oxygen deprivation did to his body. We were given a 20% chance of taking him home one day. Every day during rounds with the doctors, they kept saying he wasn’t strong enough to trial off the ECMO support. His little body was retaining too much fluid. After 11 days on ECMO, I was expecting to be told it would be another rest day, but a bleed started in his brain. He was taken for an emergency repair on ECMO an hour later.  After five hours, we got a call the surgery was successful and they were going to trial him off his ECMO. An hour later, he trialed off successfully and started over breathing the ventilator. His right lung, previously unseen on X-ray, was about half of a normal lung. Two weeks later, doctors were confident he’d survive. For the next month, he weaned from his vent, I held him for the first time at 20 days old, he was allowed to start coming out from sedation, and he’d opened his eyes to look around. His face was so full of expression, and I knew he’d be real chatty when he got the chance. 


Henry CDH ECMO survivor

At a month and a half old, Henry was extubated. He was on CPAP for one day before being put on high flow. He weaned from 6 liters to 3 liters in one month and graduated from the NICU to the recovery floor at 3 months old. On the recovery floor, he had a wean from 3 liters to 2 liters, causing his right lung to collapse. He was put back on 3 liters, the, 4 liters, then they considered sending us back to PICU. Doctors started albuterol treatments when they noticed he was struggling to get air out and wheezing.  We currently are still on the recovery floor of Seattle Children’s Hospital and Henry weaned down to 2 liters successfully today. He’s so strong and so loved. He’s my first baby, my parent’s first grand baby, and my sibling’s first nephew. He truly completes our family. He turns 4 months old on 04/23/19. Miracles are real.