Your Brother's Journey

My Dearest Avery,

I know it's been a long time since I've written. It's not for a lack of activity, that's for sure. I'm not sure when I'll share the fact that this blog exists with you, but I know it won't be for years to come. In fact, I may remove this post before you get to see it but for now I want to dedicate some space to your little brother, Alexander - I imagine you won't mind ;)

My last post to you was in September. Back then, we were anxiously awaiting a visit from Grandma and Pop Wadsworth, and dad and I were looking forward to our 20-week ultrasound to find out if you were going to be a big sister to a boy or a girl.

That ultrasound was October 8, and we were the first appointment of the day. We'd already dropped you off at daycare because those are usually long scans. Ours was actually cut short. Soon after the scan started, the technician said she had seen several things that were not right and left to go get the doctor. We were left alone for a long time. We knew that was bad because it happened with you - you had choroid plexus cysts in your brain that ultimately healed without any issues - but that was a scare we received at your 20-week scan.

When the doctor first came into the room, he didn't say much to us at all. He worked with the technician to confirm what he was seeing, as he was in disbelief that it hadn't been detected at the 12-week scan. He took a deep breath and put his hand on my shoulder and told your dad and me that the baby's condition was "not compatible with life". He told us he was going to spare us the details but said there were so many things wrong with the baby that there was no chance of survival and he would give him/her (they couldn't see which it was) 1-2 more weeks to live in my womb before passing. We found out about something called hydrops fetalis, which we now know more about than we ever wanted to know, and he indicated we could do an amniocentesis to learn more about the cause. He also offered that we might want to consider abortion. We left through a back door that day.

The following days evolved into weeks and then months. We learned a lot in that time: your younger sibling was a boy, he had massive ascites (fluid in his abdomen), edema around his head and neck, bilateral clubfoot, and a small amount of fluid in his chest and around his heart. Another doctor gave him 1 month to live in my womb before passing. We did an amnio, but everything turned out perfect, with no cause for his condition. We did blood work to see if there was an infection, but resulted in nothing there as well. And while we value the ability to choose, we chose not to abort (as you will probably know by the time you read this, your dad and I prefer to let nature take its course).

As the time passed and your brother, named Alexander Vaughn by then, defied all doctor predictions by staying with us with a strong heartbeat, we visited a pediatric cardiologist to see what was wrong with the heart, as that was the leading theory for a cause. He indicated the heart looked perfect, except the fluid around it. With no answers related to the cause, the doctors were unable to do anything to treat him. We also found out that the edema had subsided but he had fluid building in his brain, which likely impacted brain development (at the 20-week scan, we were told that his brain was perfect).

We then started discussions about caring for him should he survive. We had been having sleepless night after sleepless night, trying to digest what it would mean to have a stillborn child. And then all of a sudden the doctors wanted to talk about survival! It was truly a shock and it made me really question what was best for your brother. The possible outcomes were so varied: he could pass, he could survive for a short time, he could be in a vegetative state, he could survive with severe physical and mental disabilities, he could survive and merely be slightly delayed.

Dr. Google was no help but we learned a lot about other people's stories. Some were amazing miracles and some were heartbreaking. In all honesty, the doctors we were seeing weren't much help either, other than providing status updates. To their credit, they were doing the best they could with the information they had. Unfortunately there's not much research on hydrops. Some say that's because of the high fetus mortality rate, but I believe it's because of the 80-90% of people in this situation who choose to abort.

For me personally, the worst part was seeing people's reactions when I told them our situation. I found that people generally want to hear that things are going well and move on with their day so I let them. As a result of his condition, my belly got bigger a lot faster than it normally would have, so I looked like I was due earlier. I think that sparked more conversation than normal but I still couldn't find the words to explain what was going on, especially since we didn't know what the outcome would be.

You're so young right now that you didn't understand there was a baby in my belly. I believe that is a blessing for us; I may not feel that same way when the day comes that we tell you about Alex, but for now I'm happy that you don't have to try to process this confusion or grief.

I think that's enough for one blog. I'll dedicate another one to Alex's arrival.
All my love,
Mom

Link to Alex's arrival here.