Yesterday we met with our genetic counselor to talk about our boy. I asked a lot of questions—really good ones, I thought—about what to expect moving forward, what we could anticipate, and if and how we want to intervene.
It was a hard conversation.
For starters, we have a 37 percent chance of carrying to term. The GC said that was actually pretty high, but those aren’t good odds. That’s a solid F. It’s not even a D- if you grade on a curve. It’s the grade you hope your professor will drop. But, our GC said we’ve already made it further than most so that made me hopeful. Mike and I just want to meet him. If we have to lose him, we want to meet him and tell him we love him. That is the most we are hoping for.
Just typing that makes me cry.
If he makes it to term, he still has to make it through labor and delivery. Trisomy 18 babies really struggle during labor and delivery. It’s hard on all mamas and babies, but it’s especially hard on these special babies. The stillborn rates are incredibly high. In a normal situation, doctors would perform a crash c-section when they know the baby is struggling. For trisomy 18 babies, they hesitate because of the risk to the mama. For that reason, many couples choose not to monitor the baby during labor since the outcome will still be the same. If you think I’m callous for speaking so plainly, please know that I am dying inside as I write this. I cannot pretend that the outcome will be different. I cannot believe I have to make this decision. God, help.
If he survives delivery, we won’t know if he’ll be able to breathe without a ventilator or even swallow, as many trisomy 18 babies struggle with both. If he can’t swallow, we have to decide whether or not to intubate him and feed him intravenously. “Some families choose not to and opt to provide comfort care for their babies.” When I asked what that meant, our GC gently explained that the nurses will make sure the baby is sedated so he’s comfortable as he lives out the rest of his natural life, however long that may be.
Up till this point, I’d tried really hard not to cry because I wanted to get through all of my questions. I was proud of myself because this was a feat in itself. I am a weeper, a feeler of all the feels. I cry all the time. This admission—knowing we might have to make this decision—broke me. How does anyone make these decisions?
This wasn’t even the worst news.
Our boy’s heart is really broken. Even before we knew he had trisomy 18, we knew he’d have to have surgery within days of being born, and then several times before the age of two. Most cardiologists won’t operate on a baby with trisomy 18 because most won’t survive the surgery; it’s hard enough on a healthy newborn, let alone on one whose heart is as broken as our boy’s. I’ve had heart surgery to repair one of the problems he has. It was no joke. If he survives labor and delivery, I wouldn’t want to be apart for him for a second knowing it could be his last. I wouldn’t want him to be in pain. More impossible decisions.
The perinatologist confirmed what I’d feared: If my boy survives to term, survives labor and delivery, and we help him breathe and eat by intubation and IVs, his heart will fail him.
It is a strange and terrible thing to know how your child will die.
All the challenges I thought I’d face—breastfeeding, adjusting to lack of sleep, having a baby in the NICU after major open-heart surgery—pale in comparison to what lies ahead. I’d hoped to at least bring him home, but I don’t think I can bring myself to do it. I don’t want to watch him struggle as his heart fails and know there’s nothing I can do to help relieve his pain. The alternative is to spend our time with him in perinatal hospice where the staff will ensure he's comfortable, and that we have a safe space to be with him and have others meet him. I thought I'd be decorating a new nursery. Instead I've already started thinking about how I want to make our room feel as much like home as possible.
Do you want to know what really wrecked me? When our GC asked if we’d named our boy. I sobbed so hard. This isn't how I imagined sharing his name. We were going to wait until after he was born, but now I'm not sure when that will happen or what that will be like so it doesn't make sense to waste any time. I want you to know his name while he's still here.
His name is Arlo Matthew.
Since I assume you'll ask--because she asked--I'll share what I told her.
I love the name Arlo. Even before he was born, I used to imagine people asking me my kids’ names, and I’d whisper, “I have two boys—Holden and Arlo.” It always made me smile. I chose the name “Matthew” to honor my friend’s brother, who is facing his own end with more courage, dignity, and attitude than I’ve ever had in my entire life. Watching my friend love and support her brother—hearing about how he’s facing the end of his story—has been heartbreaking and inspiring. If I can do for Arlo a fraction of what my friend is doing for her brother—if I can live with the same courage and zeal he’s exhibiting—I’ll feel like I’ve done a good job.
Our GC reached over, squeezed my knee and said, “That's a wonderful name." And then she got teary-eyed and added, "You are choosing the harder path. Your son is so lucky to have you guys as parents. It’s obvious how much you love him. He is a lucky boy.” I ugly-cried in front of her while Arlo moved in my belly, unaware of my sorrow.
We saw his face. That was the only redeeming part of the appointment. The perinatologist mentioned some other finding about his brain, but she wouldn’t go into detail. I think she figured it wouldn’t change anything, that we’d had enough bad news. She said he looks small, that he’s a few weeks behind in terms of growth, but that’s normal for trisomy 18 babies. Arlo seemed nonplussed. He was active and uncooperative during the scan, which made us laugh. Our tech spent a lot of time trying to get us decent pictures. We didn’t say what we all knew: these could be the only pictures we ever have of him. I normally think ultrasound pictures are only special to the parents. (I mean, honestly—what are we looking at?! Even I get it wrong half the time.) But, I’m sharing these with you because I don’t know if we'll have more.
This is my son, Arlo. I'm so happy he's still here, and that he's ours.