Thread by @wtadler

In February, my wife Sarah and I decided to terminate our wanted pregnancy, at 24 weeks.

I've since realized how common stories of pregnancy loss are, and how important it is to tell them.

@AFettersMaloy's piece inspired me to share our story. 🧵
washingtonpost.com/lifestyle/2022…

The 1st trimester was great. Sarah was tired, but she would be up for the occasional karaoke night, even after a long day of teaching. She ran a half-marathon at 11 weeks and bought a commemorative half-marathon onesie for our baby—she felt they crossed the finish line together.

But things went south in January when we learned that we were both carriers for a rare, severe blood disorder (CAMT-MPL). We each carried one good allele and one bad allele for this particular gene.

There was a 25% chance that our baby inherited both bad alleles, and therefore had the disease. Sarah was 19 weeks pregnant when we learned this.
To find out if our baby had the disease, our doctor did an amniocentesis, withdrawing a sample of amniotic fluid to be tested.

That same day, we did a detailed anatomy scan. The ultrasounds were stunning. Sarah cried as she watched the monitor above our heads, moved by the incredible life inside her, and devastated by the possibility that there might be something horribly wrong, despite the normal scans.

We were told that the genetic testing of the amniotic fluid would take 2-5 weeks. That's a lot of time to wait and wonder if your baby has a potentially fatal disorder.

We took short trips each weekend to keep ourselves busy. We tried not to go down dark rabbit holes researching CAMT—after all, there was a 75% chance that everything would be fine.
“Those are good odds,” people kept telling us.

We went on hikes, went to weddings, and told friends about our agonized waiting. Sometimes, we’d burst into tears, imagining the worst. Old favorite songs took on new resonance.

4 weeks after the amniocentesis, I got the call. We were unlucky—our baby inherited both copies of the mutated gene and therefore would be affected by the disease. "I'm so sorry," the genetic counselor kept repeating.

We lit a candle. We sat on the floor of our living room and cried for hours. We called our parents, and their hearts broke too.

[statistical sidebar] My wife and I are Ashkenazi Jews (AJ). About 1/75 AJs carry our specific mutation. If you randomly draw two AJs and they make a baby, the odds of the baby having our version of CAMT is 1 in 22,500. This was some shitty luck.
pubmed.ncbi.nlm.nih.gov/21489838/

We took leave from our jobs to focus entirely on our crisis and figure out what to do. At this point, we were hit with a sudden and firm desire to imagine our baby as a particular person. We found out the sex: male. We’d previously wanted to find out at birth.

And we decided to give him the name we’d picked out in week 18, just before everything unraveled: Jordan.

We went down the rabbit holes we wouldn't let ourselves go down before, in order to figure out what to do. We spoke to a CAMT scientist in Germany and pediatric specialists around the country.

We read up on CAMT. We talked to scientists about what life with CAMT would look like. We found out that we had the worst variant of the disease—a nearly-complete inability to produce platelets.
haematologica.org/article/view/9…

Without platelets, blood cannot clot. Any minor injury could have devastating consequences. Jordan would need a central line put in his chest soon after birth to facilitate platelet transfusions about every other day, until he could get a bone marrow transplant.

And without a bone marrow transplant, he would "absolutely die," one scientist told us. So we talked to bone marrow transplant specialists to see what the transplant process would be like.

If you locate a marrow match (which is likely but not guaranteed), the process is brutal. We'd be living in the hospital for 6 or more weeks with a 6-month-old infant going through chemotherapy. Many potentially fatal side effects are possible.

And even if the transplant went well, we wouldn't be out of the woods. For about a year, there would be a risk of transplant rejection.

After taking days to collect information, process, and talk to friends and family, we made the decision to terminate the pregnancy. For our sake, and for Jordan's. It was the hardest decision we've ever made in our lives. Sarah was 24 weeks pregnant.

We have always been firmly pro-choice, and are even more firm today; that doesn’t conflict with our experience of Jordan as our child, a child who we desperately wish we could have raised.

We took solace in something that one friend said: “You guys are already parents, and you’re doing what parents have to do all the time—make impossible decisions for their children that their children can’t make for themselves.”

That night, we went to bed and cried, thinking about our little family that didn’t have much time left together.

We went to @DupontClinic the next day for a D&E, a 2-day procedure. Although those two days were inherently traumatic, we also received the most compassionate medical care imaginable.

Before we met doctors or nurses, we met our doula. The first question she asked us was “What do you need from us to help you through this process?” Imagine if every serious medical procedure began with that question.

The first step is to stop the fetal heartbeat. We signed forms indicating “consent to induce fetal demise.” We made arrangements with a funeral home to cremate Jordan. I kissed Sarah’s belly, kissing my son goodbye. We entered the procedure room, bracing ourselves.

With us watching the screen, the doctor conducted an ultrasound. The shapes were unfamiliar and vague—a stark contrast to our last ultrasound, where we could make out an intricate spine, twisting hands, a beating heart, and developing brain structures.

He looked concerned. He pursed his lips and asked when our last ultrasound was. "5 weeks ago," we said.
"He’s already passed, probably soon after your last ultrasound."

We were stunned. The doctor and the doula left us alone, giving us space to hold each other and cry—Jordan was already dead, and had been dead for weeks.

Some people have said things like "at least you didn't have to actually go through with the injection." But we got about as close as possible—when we learned that he was already gone, we were probably sitting inches away from a lidocaine-filled needle for stopping Jordan’s heart.

But there is some truth in this—we are grateful we didn’t have to experience that particular agony.

One friend described it in an opposite way: "one last twist of the knife." For 5 weeks we had waited, researched, and ultimately made an unbearable decision. And there was never any need, because he had been dead the whole time. This friend’s description also feels true.

We spent the night processing with my sibling Ro @bucket_of_rocks, who had driven out to take care of us for the week. The next day we went in to "remove the pregnancy." When she came back from the procedure room, Sarah collapsed on the couch. “I miss my baby,” she wailed.

Ro picked us up at the clinic. Sarah crawled into the back seat of the car and lay under a blanket. For the first time in 24 weeks, Jordan was no longer with us.

We contacted more scientists, confirming that CAMT probably caused the miscarriage—Jordan must have gotten a bleed that wouldn't clot. Miscarriage may have always been likely; of the 0.02% of AJ couples who pass on both bad alleles, many may have late, unexplained miscarriages.

[historical sidebar] In our reading, we found out that autosomal recessive diseases like CAMT in the AJ population are in part the legacy of Jewish genocide going back to the Crusades, resulting in population bottlenecking and genetic homogeneity. dnascience.plos.org/2018/11/08/the…

We are slowly picking up the pieces of our lives. A month after the D&E, we had a tree planted in front of our house—Jordan’s tree. We look forward to watching it grow.

When the tree bloomed with white flowers, we carried out a ceremony that Ro lovingly designed for us. We gathered books and toys that we wanted to share with Jordan and other artifacts of the pregnancy, arranging them in a small bookcase in what would have been his room.

Several weeks later, when we had the capacity, we went to get Jordan’s ashes. Through tears, Sarah signed her name on a form. Next to “relationship to deceased,” she wrote “mother.” We sat in the car in the parking lot, holding a tiny box. “Let’s bring him home,” I said.

Walking into the house was devastating. We planned to bring Jordan home in a onesie that Sarah, her brother, nieces, and nephews all wore home from the hospital. Instead, we walked into the house carrying a small cherry wood box.

We plan to conceive again through in vitro fertilization; amazingly, it is possible to test and screen 5-day old embryos for this disease, nearly eliminating the risk of a future pregnancy being affected.

But as hopeful as we are about our future and the family we hope to grow, our grief is boundless. We loved Jordan, and we always will. We will always miss him. We will always mourn the person who he could have been, if not for the one errant nucleotide that shattered our lives.

People tell us that we seem to be “getting better,” as if we’re recovering from an illness. While this sentiment is well-intentioned, it also hurts. Jordan will always be our first child, a child we loved and lost. “Progress” is not a narrative that feels relevant.

We wanted to share our story because these stories are kept secret too often. As we’ve shared our loss with friends and family, people have reached out to us, holding back tears as they shared their own stories.

But you generally don’t hear these stories until you mention your own. We hope that in sharing ours, we can encourage more conversation and more awareness about families like ours, whose hearts have been broken by the loss of a baby we never got the chance to meet.