A Shot at Life

It’s been over a week since we found out about Aiden’s condition. During this time, I have really held up well and been able to keep my emotions under control. But those emotions finally caught up with me last night.

When we first heard the news, the doctor was very careful not to give us a false sense of hope. Talking with him in that hospital room was very hard. I thought that the chances of having our son grow up and live a normal life was slim. So I started out with this idea that Aiden would most likely pass away a few days after birth. I cried a little…Brent and I both did. But overall, Brent and I felt overcome by the strength that comes from having the truthfulness of the gospel in our lives. I immediately felt grateful that the chances of giving birth to this little baby and getting to meet him, even if only for a few days, are very high. My gratitude was heavily influenced, no doubt, by our miscarriage in December. This time, I would at least be able to rely on the promise that Aiden will be ours forever, whereas last time, I could not.

As the days went on, Brent and I poured over articles and websites trying to learn more about our son’s diagnosis. Hypoplastic Left Heart Syndrome is serious…and we were quickly confirming this. Aiden will have a lot of medical challenges to overcome. But even so, a lot of children have been able to thrive despite this condition. Brent and I began to feel hope and this hope was only strengthened as we felt the love and support from our friends and family. Each day, we would try to focus on the positive and each day, we found more things to be positive about.

I was really excited to find out about a new procedure that is practiced at a children’s hospital in Boston yesterday. So far, we had only really learned about the traditional procedure for kids born with this condition…a series of three open-heart surgeries beginning within the first few days of life. Without these surgeries, Aiden will die. We know that. But even still, the surgeries are not a fix all. Aiden will not develop the left side of his heart. These surgeries only allow his right side to continue doing all the work to keep him alive. However, this new procedure I read about tries to get the heart to heal itself and develop after birth. This way, these children will no longer have a single ventricle heart, but a full heart with both a right and a left side. When I read that Boston Children’s Hospital had developed a procedure like this, I was so excited! I wanted to look into this and see if it was something Aiden could undergo. So I emailed the pediatric cardiologist that we had met with, and asked him about Staged Left Ventricle Recruitment. And he responded later that night. Essentially he said that he did not think that our baby would be a good candidate.

I didn’t realize how fragile my feelings of hope had been before reading the doctor’s response. This whole week, I had been trying to find the positive. I have been envisioning bringing my baby home and having him grow up strong and healthy. And it really has helped. I plan on continuing to be hopeful. But I realized last night that I hadn’t given myself time to be sad and to grieve. I haven't given myself the chance to grieve over the loss of the child, the future, I thought I was going to have. I cried a lot last night. Brent was away working, but he was able to sneak away for a short break and came running to comfort me. (Have I mentioned how amazing my husband is lately?) I told Brent I didn’t want to do this. I don’t want to go through with the uncertainty of Aiden’s health, watching him go through surgeries and trying to recover medically for the rest of his life. I thought that maybe it would be better to just enjoy the time with him that we have and let him pass peacefully. I don’t know if I could handle not knowing what will happen every time he goes into surgery, or not knowing how long the right side of his heart will last for him, or not knowing how to take care of such a fragile infant. Brent so very lovingly reminded me that it wasn’t about me…it was about Aiden. I am terrified. But this is Aiden’s life I have to make decisions about. For me it might be easier to some extent to know what will happen, and not to have so many questions about what could happen. I guess that’s the planner in me. I would much rather him die with us at home then die during surgery or recovery hooked up to millions of wires and monitors. But it’s not about me…it’s about him. Does he deserve every shot at a fulfilling life that we can give him? Yes. He most definitely does. It's difficult, but Aiden deserves a shot at life. I need to be strong enough to go through what it takes to give that to him. And I hope with everything I have that it will be worth it and that I will have the blessing of watching this sweet, precious little boy grow up happy and healthy.