We know how this story ends

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.

Some good news, some bad news, and why I need prayer

I’ve been pretty quiet online for a while because life has been wild this year. Aside from Mike traveling a lot for work, which is cool for him and sad for me, we were surprised to find out we were pregnant with a free baby. As in, no shots required. Can you believe it? My doctor said it was highly unlikely that it would ever happen for me without IVF so I'd given up. I was convinced I’d have to shoot up again this year to try to get pregnant, and I was dreading it. I hate the IVF/FET process so much. I was not one of those strong, super-positive mamas who focused on the end goal. I cried fresh tears daily over the shots and infusions. I hated them. I just wanted to get pregnant without getting stabbed.  

The good news

And then it happened. I took a pregnancy test and sobbed over those two pink lines. I'd never seen them before in real life, but there they were--two dark pink lines that showed up immediately on that pee-soaked paper strip. I took 12 more tests just to be certain--not on the same day because that's wasteful--and saved all of them. (Mike pointed out that I just needed to save one, but I told him to let me live.) We couldn't believe our luck even after all of the positive pregnancy tests and confirmation from the doctor. It was just too good to be true. 

At first I didn’t say anything because I felt guilty about getting a free baby when I know so many women who are still slogging through infertility and braving daily fertility treatments. I'd become the success story that everyone likes to mention when you finally get pregnant after successfully adopting your child or getting pregnant through IVF, and I felt really bad about it. People mean well, but those stories aren't helpful--at least they weren't to me. Why? It's hard to hope when you've been disappointed so many times. 

An early look (around 12 weeks) at our claymation baby--a weird and wondrous sight to behold.

The bad news

Just when I thought I was ready to share our great news, I started getting abnormal test results. After several blood tests, ultrasounds, and an amniocentesis, we learned that our baby was special, but not in the way I wanted. He has trisomy 18. If you don’t know what it is, it’s a chromosome disorder marked by life-threatening birth defects with a high mortality rate. Only 10 percent of babies with trisomy 18 live to a year. We were shocked. Angry. Devastated. Heartbroken. Resigned. I mean, it really was too good to be true. We couldn't just have a miracle. When the first abnormal test results came back, I said, "God, please don't make me do this. Don't make me survive this so I can help someone else do it. I've already done it. Give me something else. Please." I have whimpered and moaned this prayer a few more times, but all I've heard are my own choked sobs. 

I have cried myself to sleep every night since we got the news last Wednesday. Our sweet boy is due in September, which feels like an eternity from now, and I am no longer looking forward to meeting him because I can’t bear the thought of saying goodbye. And yet, I do want to meet him. I am hoping he lives long enough for us to meet him. I want to see his face and tell him we love him—tell him he is the miracle we never thought we’d get—and then tell him goodbye for now. I want to tell him how sorry I am that he can't stay. Really though--I'm sorry for myself, not him. He gets to go be with Jesus with his brother and sister, and I have to live without him.

Where we are now

We are entering into uncharted territory, and I’d be lying if I said I wasn’t afraid. After years of infertility and two losses, I feel like I’m acquainted with sorrow, but what lies ahead feels utterly foreign and terrifying. I know God is with me--that He will help me survive this just as He helped me survive infertility and loss--but I desperately wish I didn’t have to walk this road. I don’t want to do it. 

I don’t want to know what it’s like to plan a funeral instead of a birthday party. 

I don’t want to know what it’s like to give birth to an angel or watch my child become one. 

I don’t want to have to say goodbye when I’ve hardly had a chance to get to know him. 

This little guy keeps moving around in my belly as if to remind me he’s still here, still fighting, and that has helped a little. He doesn’t know his heart is broken--that his body isn’t knit together the way it’s supposed to--so I talk to him as though everything's alright. I've told him about his big brother, and I tell how much we love him, that we hope to meet him. Does he know I often cry when I’m talking to him? I hope not. But maybe he does. 

A request

I’m sharing this for a few reasons. The biggest reason is because I need prayer. I have stopped praying for a miracle because it breaks my heart too much to hope. But, I know that prayer is powerful. A few of our friends and family members are praying for a miracle, and I’m grateful they are praying for one on our behalf. I am praying for strength to get through each day. I’m praying that my boy doesn’t suffer--that I will get to meet him--and that his inevitable passing will be peaceful and painless. I’m also praying for peace and wisdom as we try and make the best decisions for our boy. God knows I don’t know what I’m doing. 

I'm also sharing because I want you to know about my boy. I have a boy growing inside of me—a broken-hearted miracle child—and he is deeply cherished and loved. I want you to know he’s alive so you won’t be surprised when I tell you he’s gone. I wish I could tell you more about him, but this is all I know for now. If you’ve made it this far, thanks for reading. If you’re going to pray, thanks for praying. If you see me and don't know what to say, say that--just say you're sorry, and that you don't know what to say. That's enough, and it helps more than you know.