Odds and optimism: Building a family after the loss of a child

Odds and optimism: Building a family after the loss of a child
These flowers are among the first to bloom in my parents' garden in the spring. This year, one additional lone bud bloomed in September. My mom called it her hope flower.

Odds are sort of an odd concept for Joe and me.

When I was about 10 weeks pregnant with Nathan, I got a call from a nurse at my OB’s office. Blood tests from my visit two weeks earlier — my first official prenatal visit — showed that I was a carrier for a genetic condition called spinal muscular atrophy (SMA), she said. I had never heard of the disease. I didn’t know my blood was being screened for it. But it turns out that I’m one in about 40 people who’s a carrier.

SMA, as Joe and I learned, affects motor nerve cells in the spinal cord. The lack of a protein necessary to these cells’ function means that different muscle groups don’t get signals to work as they should. There are four forms of SMA, and they range widely in severity; complex genetic factors seem to make it more likely that I’d pass on the gene for a less-severe type. The most common form, though, often is fatal by the age of 2. As the organization Cure SMA notes, spinal muscular atrophy is the leading genetic cause of death for infants.

The OB nurse said the next step was for Joe to be tested. If he wasn’t a carrier, we’d have nothing to worry about.

But, as it turns out, he is. We went from a one in 40 chance for each of us of being an SMA carrier to a one in four chance that any biological child of ours — including the one whose heartbeat I got to hear for the first time just before being told Joe’s bloodwork results — would have this disease.

Joe and I decided we wanted prenatal diagnostic testing done to determine whether our baby was affected. We were in agreement that the outcome wouldn’t affect whether we’d proceed with the pregnancy; we believed that this pregnancy was a blessing no matter what, and my own faith- and running-informed view was that I wanted to give this child a chance to run his or her race, regardless of how long it was. But if it was likely that our child (whom we had nicknamed Blueberry) was affected, we wanted to know, for preparation’s sake.

Three weeks later: The test was negative. Low likelihood of SMA. I cried. I called Joe. I called my parents. My mom asked if I had found out the gender, but I had been so relieved on the phone with the nurse at my new doctor’s office that I had forgotten to ask. I called back. Blueberry was a boy.

The rest of my pregnancy was mostly uneventful. We couldn’t wait to meet our son. We were so excited to welcome him into our home, actually see him when we read him bedtime stories and mess up his neatly organized nursery.

Aug. 24 came, and our wonderful, strong, brave Nate the Great arrived. And then Aug. 26 came, and he was gone. In between were some of the most beautiful and awful moments of my life.

The congenital condition that Nate had, an arteriovenous malformation in his brain, is completely unrelated to SMA. An AVM is a structural problem affecting the blood vessels; it likely would have developed during my first trimester. (The National Institutes of Health puts the prevalence of AVMs at about 0.1% in the U.S. population and notes that each year, about 1% of those who have an AVM will die as a direct result of it.)

One of Nate’s doctors at the University of Chicago said it was apparent that Nate’s AVM, which hadn’t been visible on my prenatal ultrasounds, had been bleeding for several weeks before he was born. I view it now as miraculous that Nate was able to spend as much time with us here as he did.

Joe and I went home from the hospital in August knowing we wanted to try to expand our family further. We both feel like we have a lot of love to give as parents. We will always love Nate immeasurably, and he is as present in our day-to-day lives (and, we know, in the hearts of our family and friends) as any person not physically here could be. But Joe and I want, too, to be able to pour out for a second child the parental love that we feel.

Deciding how we will try to make that happen is difficult. Back in the spring, I thought that if we had known sooner that we were SMA carriers (the mixed blessings of modern medicine), we probably wouldn’t have tried to conceive the old-fashioned way. Now, I’m not sure I feel that way.

We’ve researched adoption; we’ve researched preimplantation genetic diagnosis. (PGD, used with in-vitro fertilization, is meant to ensure that only embryos unaffected by a particular genetic disease are implanted in the mother. This has no bearing on something like development of an AVM, though.) We’ve gone back and forth with each other and ourselves about our strong desire for another biological child and our ethical and practical concerns about trying either a science-assisted or an old-fashioned route to pregnancy. We’ve met with a genetic counselor and I’ve talked with a pastor friend.

There is a photo of me, nine months pregnant, standing arm in arm with my mom in Joe’s and my backyard. We had had my parents over for dinner, and when I posted the photo online, I had added the note, “Next time there should be another person with us!” I deliberately chose “should be,” not “will be,” because 1) I had a hunch that this kid would be late and would give my parents the chance to be back at our house before he arrived, and 2) you shouldn’t take anything for granted, you know?

It’s kind of sad, when I think about it. I didn’t spend every minute of my pregnancy worried, but I was…aware. Aware of statistics about miscarriage and loss. Aware of loved ones who had suffered the heartbreak of losing a baby. And now I know people who have suffered that loss multiple times. For someone who considers herself ultimately an optimist in life, I’ve never been of the “never thought it could happen to me” mindset.

But you know what protection this kind of mental caution offers? None.

In any situation, I’m good at recognizing the potential for disappointment, heartbreak. What I want is to see more potential for unexpected joy. That was a theme of a prayer at my church several Sundays ago, and it has stuck with me: There is pain in some of our days ahead, of course, but there are also joys yet to be revealed. Imagine that!—joys that haven’t even crossed your mind.

So, as I look at 2015, I think: I want to get my hopes up. I want to infuse more optimism in my tendency toward cautious optimism. I look at pictures of Nate, and I see a strong, beautiful child. I want to be bold and brave like him and for him.

 Joe and I haven’t decided for certain how we’ll next try to grow our family. Our next path might not be our last, either. Every way of trying to build a family is something of a gamble; every route we’re looking at has its sadder odds. But my God, in any situation, isn’t it worthwhile to realize that things can also turn out better than they might? Really, what better thing can you do than allow yourself a little pure, uncomplicated hope?

• Christine LaFave Grace works as an editor and writer in Chicago.

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