23 Apr Waiting for a Match
My son was born in 2013 and we didn’t know there was anything wrong.
I had a completely healthy pregnancy and then he was born premature.
When he was born he was jaundice—which causes yellowing of the skin and eyes. No one was worried about it because that’s pretty normal in premature babies. A couple days later they sent us home, but they wanted to watch him closely. We were getting blood drawn every three days for his first two weeks of life, and then it got a little bit better and
we thought, “Oh great he’s getting better—we’re good to go. It was just a premature thing.”
But when he was a month old, we went back for just another check of his lab work. His bilirubin levels had jumped and it was the bad kind. That was a pretty sure signal that there was something wrong with his liver.
Our pediatrician sent us down to Nationwide Children’s Hospital where we had a couple days of testing. One test was inconclusive so it led to another test and another.
In hindsight, knowing what we know now, they were not finding any bile flow out of his liver. That meant a complete blockage or it meant he was missing parts. He was little—at that point, he was only about 6.5 pounds. They were looking at these little microscopic vessels and they said the only way to find out what was going on was to do surgery. So, when he was 7 weeks old, they went in to take a look. They told us that when they went in they would either just look to see if they could find all the proper structures. In that scenario, they weren’t really going to do anything at all and that just meant he was going to need some medication and that was it. The other scenario, which was worst case scenario, is that he was missing a bile duct out of his liver. If that was the situation, they were going to need to create one.
They got in there and found that was the case—he was born without a bile duct. The diagnosis was biliary atresia. All of his bile was stuck in his liver. It was backed up into his liver and the bile was just eating away at his liver. It ended up being a 6.5-hour surgery. It was such a major surgery for such a little guy. We already knew the statistics going into the surgery. Without that surgery, the diagnosis is fatal. Statistically, at the time, 75% of patients with biliary atresia would need a liver transplant before the age of 5, so we knew this surgery was kind of a stopgap measure. This was going to buy us time—nothing else. It was not a cure.
His surgery was successful though and we started to settle in having a newborn. We created a new normal. He took daily medications but really, he was pretty healthy and normal. When he was about 5 months old though, his lab work started to get a little weird and his belly started to get round and distended, and by 6 months he was in acute liver failure.
We knew the first surgery had failed.
At the time, Nationwide Children’s did not do liver transplants so we ended up going to Children’s Hospital of Pittsburgh. They added him to the liver transplant list in January of 2014, but the problem was that we needed a very tiny liver.
So, essentially, we were waiting on another infant to pass. Which was awful. It was awful to think about as a mother — I needed someone else to lose their baby in order to save mine.
It was heart wrenching.
He was only 12 pounds at the time and needed this tiny liver, and he also had a very rare blood type. We learned that living liver donation was possible. My husband was not a match, and I was a “worst case scenario” match. I’m a universal blood type and they could have used a portion of mine, but it wouldn’t have been ideal. They also don’t like using a parent as a donor, especially a parent who is the primary caregiver. I had to quit my job when he went into liver failure. Obviously if it got to that point, I would have donated in a heartbeat. We just kept waiting and waiting for that match.
They told us that their best guess was a 6-9 month wait. He was in the hospital for most of the time we waited. He was starting to have life threatening complications. He was in the ICU at Nationwide for a lot of this and they were just managing symptoms as best they could.
There was nothing they could do.
All we needed was time and a liver. As his health deteriorated, they re-evaluated his score which indicates his “place in line” on the transplant list. They moved him up the list and we were now looking at a couple of weeks but it was still very real that the right match might not come in time. He wasn’t quite at the emergency stage, meaning he only had days left, but that was our next step. In the meantime, we knew it was getting worse and he was running out of time so we started looking at living donation. Again, my husband and I weren’t a match, so we used social media.
We posted about it, emailed our families and said, this is what we’re looking for. There were so many responses–we don’t know how many, but the transplant coordinator said it was a lot though. It was one of those things that is so overwhelming as a parent to know there were so many people out there willing to help our son. We had a couple people that were pretty serious matches on paper so they decided to bring one in and do a full evaluation in Pittsburgh. It ended up being my husband’s cousin. He was an exact blood type match.
He drove from Indiana to Pittsburgh and got evaluated. At the time we were just living hour by hour in the hospital, so we didn’t really know this was all happening. Sometimes we were trying to get through each minute. I got a message on Facebook from Zac, my husband’s cousin, and he said,
“I’m a match and the surgery is scheduled for next week.”
It was something like 5 days away. I gasped out loud and my husband came running. Any time I had done that gasp in the past, we had a life-threatening situation going on. So, he came running. I was downstairs and he was upstairs and we ran to each other. We met on the staircase and I sat down on the middle of the stairs and I read him the message. The transplant center hadn’t even called us yet. They called us the next morning.
It was finally here.
We were still hoping we would have a deceased donor mostly because we didn’t want to put someone else’s life at risk. It was a family member and to know that he was going through major surgery caused so many emotions. But that’s how it worked out. On February 26, 2014, surgeons cut a portion of Zac’s liver off and gave it to our son. The surgery was about 8 hours. Zac was in a hospital across town. One of the pediatric surgeons was there helping take it out and then he drove it over in an ambulance. They said I might actually be able to see the ambulance come over the bridge. We stared out the windows for hours.
As crazy as it sounds, it was a huge sense of relief handing him over to the surgeons that morning. We knew this was the last and only option for him to possibly survive. I knew I was handing him over for a very long time and I wasn’t guaranteed to get him back. It ended up being 12 hours total before we saw our little guy again.
Surgery went really well. They took his diseased liver out completely and replaced it with the piece from Zac’s. I remember crying the first time he had opened his eyes after the transplant and his eyes were white. We had never seen his eyes white before. That’s something you take for granted when you have a healthy child. I just had tears streaming down my face as I looked into his bright eyes.
We have this unique perspective now. The littlest milestones are huge in our house. It’s been a bumpy journey at times, facing some new challenges that come with post-transplant life but the fact that he was healthy enough to start preschool this past fall is incredible. He has delays in some areas but really excels in others. He’s a pretty typical and mostly healthy kid now. Yet, he has these things that make him extra special. He loves doors. He’s a big fan of elevators. Seriously, he could ride elevators all day, every day. He loves roller coasters–he’s not afraid of anything. I mean, he had an entire body part replaced, not much can stop this kid.
It’s been a crazy journey with this amazing kid. If I could go back and somehow change it where it didn’t happen I would absolutely do that, but at the same time, I think it has made me a better mom. I was a planner and liked to be in control. This experience has taught me patience and has helped me let go. I realized I wasn’t in control and there was nothing in this world I could do to be in control…and I finally accepted that. This has not only changed me, but our entire family. We don’t take things for granted anymore. We know that we aren’t guaranteed anything and to make the most of the time we have.