In memory of Wyatt
Written by his mother
November 2019
I have read many stories of families that have been trying to have children for years but are unable to and then they have their miracle child and it warms your heart. After having our first daughter, Annabelle, we were super happy and we wanted to give her a sibling that she can love and play with and make memories. We tried for three years with no luck and just as we were coming up to our fourth year and getting to the point where we were just going to give up and just enjoy the child that we had, we finally got pregnant.
At our 23 week appointment we went in for the ultrasound but the results were anything but normal. The baby had extra fluid in the back of his brain and he had clubbed feet and contractures in his hands. Wyatt also had an IUGR (Intra Uterine Growth Restriction) and he wasn't getting the nutrition that he needed to grow. At a later ultrasound, we found out that he now had a heart problem, Hypoplastic Transverse Arch, which would make it hard for him to send oxygenated blood to the rest of his body.
Needless to say, we were scared and heartbroken. But it didn't matter what he had, we were going to have this baby and we were going to love him no matter what he had or what happened. So the day came when we brought our little Wyatt into the world. Unlike most new moms who get to hold their babies before they are weighed and cleaned, Wyatt was whisked away to be stablized and cleaned and put on oxygen. I wasn't even given a glimpse of him before he was gone.
He was put on medicine to keep a duct open that would allow blood to bypass being oxygenated and feed back into his body. All babies are born with it and it closes after a few days of life. But for him to survive until he was big enough for his heart surgery, they had to keep that duct open. The medicine makes you feel like you have the flu. He was on this medicine for six weeks.
Surgery day finally came. With any surgery there could be difficulties. But he did really well through the surgery itself. He had so much water weight that they had to leave him open for three days before they would be able to close him. The first time we were told that they were leaving him open, we were horrified, but learned that it wasn't that uncommon.
Finally he was well enough for them to close him up. He was going up and down after they closed him but that was also to be expected. But then Saturday came. He was having a few issues that we had been having but more constant. My husband’s mother was visiting us and I called my mom to come down and be with us as well because there is nothing like having your mom with you when you are going through a tough time. Almost an hour and a half later, the "event" happened. No one wants to be in a situation where the monitors start beeping and everyone comes running. All you can do is step aside and let them do what the nurses and doctors and specialists need to do. No one should have to stand in the corner and watch as the respiratory team presses your child into a pancake to get his lungs and heart going. No one should watch the nurse go to the code blue button and press it to be announced through out the hospital so that EVERYONE that needs to be there to bring that child back can get to the room ASAP. No one should feel the palpitation of their hearts trying to break out of their own chest while everyone does what they can to make your child’s heart beat.
My husband, who never cries, had fallen to his knees and was crying in my lap as I called my mom to find out where she was. When she answered all I could say was "He's dying." At that point she had just pulled up to the hospital and said she was on her way up. The Doctor came over and told us that we had to make a call, they could either take him to the ER that second and cut his chest back open and put him on bypass or they could make him comfortable and we could hold him as he passed. We asked what the chances were of him coming off of bypass and they said it wasn't likely. So, we said no, let us hold our little baby boy.
Just as we said that, he came back. They didn't know how long he would be back for, so they got the chair in the room and we had our daughter come in with us. My mother was there as well as my husband’s mother. My daughter and I helped Wyatt together and through broken voice and pouring tears, we sang him his lullaby, 'Rainbow Connection.’
While he was still stable the doctor that had been with Wyatt since the very first night he came into this world, came into the room and offered us an alternate bypass that would just go through his neck rather than his chest. He felt that Wyatt just needed time to heal and that with this style of ECMO he would be able to come off of it and heal like he was supposed to. So we went for it. And it worked.
Wyatt made huge strides within days rather than two weeks like other children did. He was able to come off of the ECMO by the end of the week. After coming off of the ECMO, his healing started to slow greatly, to the point where the doctors of the ICU that he was in, didn't think he was making any progress. We called for a care conference to see what other options we had and what we could do to help him. From what they were telling us, there was no hope. So, rather than keeping him paralyzed and in a vegetative state, we said that we would gather our family and let him go.
We were in the process of calling family and work and our church, when the surgeon who did the operation came in and asked us why we were crying. We informed him of the choice that we had made. He told us that he would feel guilty if he allowed us to make that choice. And I glanced at our nurse and she looked shocked because a doctor cannot over rule a families wishes without a court ruling. But he continued forward and explained to us that Wyatt was actually getting better, he wasn't needing as many medicine drips, he wasn't needing as much oxygen assistance from the ventilator that he was needing before and after the echo on his heart, it was showing great improvement and was working like it was supposed to. Yes, he was still on meds but they were teaching his heart how it was supposed to work.
He left to gather the team and discuss what was going on. The primary doctor that we had requested, the same doctor that had been with Wyatt on his first night of life and the same doctor that had walked in and saved him the first time returned and apologized profusely and informed us the same thing that the surgeon did. So we called everyone back and told them it was a false alarm. And just like that two days later, Wyatt was off the paralytic and was looking around.
But one of the issues with BOS, is that those who have it are susceptible to pneumonia because fluid easily builds up on the lungs. While he was having his heart surgery the thoracic duct that contributes protein to the lungs got irritated and was feeding extra chylo into his lungs. It is a common thing that happens with heart surgery and most who get it irritated heal from it, but with the susceptibility with fluid in the lungs, Wyatt did not heal from the irritation. So they went in and clipped that duct so that his lungs would no longer fill with protein.
Wyatt had a hard time after his last pneumonia. And before he was able to fully recover, he caught pneumonia again. This time he crashed hard. We had to do everything for him just to survive. He was on meds to regulate his heart rate, and his blood pressure. He was on a machine to regulate his temperature and his vent was maxed out to keep him saturating properly. We knew pneumonia would be our biggest obstacle with BOS and it finally caught up to him. Going into this we agreed that if we had to do everything for him just to lay there, that was not the life we wanted for our son. And so we were letting him rest to give his Canadian grandparents enough time to get down to see him... but Wyatt was done. In a classic infamous way, Wyatt’s primary nurse came in for her shift and he ‘said’ “Watch this!” And he coded. We spent the day holding him as his body slowly relaxed into rest. We were worried that he wouldn’t make it for them to get there and hold him but he did. We all got to hold him and love him. We sang him to sleep by singing “Rainbow Connection” and now he is up in heaven with all his family.
