Our Baby in Between – Part 1

Trigger Warning: Pregnancy loss, abortion, graphic descriptions, fertility.

It took me a very long time to sit down and write this, despite wanting to, for a multitude of reasons. But this story of mine is one of the reasons I wanted to write a lifestyle blog to begin with.  I’ve been through some stuff, and I know other people have been through similar things.  I’m here for those people. On the other side of the coin, there are a lot of people who can’t even imagine being in some of these circumstances, but they think they know how they’d feel if they were.  I’m here to tell those people: You don’t know.

Almost exactly three years ago, I was due to have a baby.  My oldest son, Ben, would have just turned two years old, and my younger son, Alex, would never have come to be a part of our family. I’ll start by saying that I love my family just the way it is, and I can’t imagine our quartet without Alex.

My pregnancy with Ben was nearly perfect.  Sure, I had the usual nausea, heartburn, and joint pain. But he was healthy and so was I.  It was a great pregnancy.  I was very in-tune with my body, so Ben and I connected very early on. My partner Binda and I picked out his name fairly quickly after we found out he would be a boy, and I came up with the design for his nursery even before then. When you’re pregnant for the first time, and it’s going well, you don’t worry about much.  You do what you need to do to keep the baby healthy, like avoid listeria and stop drinking alcohol. (I had a few doctor-approved sips along the way.) But you typically don’t have pregnancy loss on the mind all the time.  That’s the difference between my “Ben” pregnancy and my “Alex” pregnancy. It was the in-between pregnancy that changed everything for me.  Let’s talk about that…

Ben was a planned pregnancy, and I got pregnant exactly when I wanted to.  I mean, I stopped taking birth control and I got pregnant that month. My mother always warned me, “When you get off birth control you either have to be very careful or be ready to have a baby. Your hormones can be all over the place, and you could be super fertile.” So, when Binda and I decided to try for a baby, I warned him just the same.  He didn’t need the warning; he was beyond ready. And when I say I was in-tune with my body, I mean I knew I was pregnant the moment it happened.  I just knew it.

The pregnancy after Ben was not planned.  I had an equally strong feeling that I was pregnant this time around, but I was older, so this pregnancy would be riskier. I was cautious.  I’m not sure why I felt differently this time, but I did. Instead of waiting 6 weeks to tell my parents I was expecting, I waited a full 12 weeks. My 8-week ultrasound was fine, nothing to worry about.  The 12-week ultrasound’s Nuchal Translucency Screening showed some extra fluid around the spinal cord in the neck, which can be a sign of genetic chromosomal disorders. When I told my parents about the pregnancy, it was a quick roller coaster: “I’m pregnant (yay!) but… it’s not looking completely great.”  I had to get some more tests done to find out what was going on.  I had another scan, and I had some blood drawn.  I waited an agonizing three-to-five days to get the results of the genetic tests. After a few days of waiting, I had lunch with my friend Carly.  We hadn’t caught up in a while, and she had just fallen in love, so I needed to have a nice lunch to talk with her and take my mind off the waiting.  While we sat at the restaurant in Annapolis, my phone rang.  I had to pick it up.  Carly didn’t know exactly what was going on, but she saw my face and knew I needed support.  She held my hand across the table while I listened to a lot of information I didn’t fully understand at the time.  They said the baby tested positive for a chromosomal disorder, but they weren’t sure which one.  It was either Down Syndrome or Trisomy 18. I tried to understand as much as I could, and I took the information back home to Binda and shared it with him.  He didn’t quite know how to process any of this, and he left it up to me to get the information that I needed to make the right decisions for our family. He reminded me that we have these tests for a reason, and the medical world has developed these procedures for a reason.  “Get all the tests, get all the information you can,” he said. He was totally supportive, but the decisions were all on me.

I’m the kind of person who doesn’t give up on anything easily.  We were advised that we had the option to terminate the pregnancy safely if that’s what we wanted. The Genetic Counselor discussed all the options of what could happen if we decided to continue with the pregnancy.  The baby might not make it to full term.  If it did make it all the way to full term, there was a good chance it would be born with severe organ malformations that would require surgery right away.  And then there would still be a very good chance that the baby would continue to have health complications, or not even survive much longer. This was devastating to hear, and I knew that any loss, weather during the pregnancy or after the birth, would be detrimental to our family.  The grief, not only for us, but for our 2-year-old son would be unbearable. However, like I said, I don’t give up easily.  I wasn’t willing to make this life-or-death decision to continue with this pregnancy or not without knowing with absolute certainty that this baby was not at all healthy. To know for sure, I would need to get an Amniocentesis, where they draw amniotic fluid, which contains fetal tissue, to diagnose chromosomal abnormalities. The standard practice is to wait until 16 weeks into the pregnancy to perform this procedure.  So, we waited.

Meanwhile, my belly continued to grow, and I hid the pregnancy from as many people as I could, telling only my very closest friends after letting our parents know. I couldn’t go through announcing this pregnancy only to not have a baby in a few months. 16 weeks couldn’t come fast enough.

When the time finally came, I had the Amniocentesis procedure.  I went by myself, and it was horrible.  No one to hold my hand or to process any news with me.  But, like most of motherhood, the mental and emotional load is something we learn to carry and deal with. The doctor drew the fluid, and it was red.  She said she had no idea why.  Oh my goodness, why didn’t she know WHY?!?  This can’t be the first time this has happened, right? But she was stumped, which made me feel even more flustered and uncomfortable. They ran the tests and she came back into the room quickly to confirm:

• Down Syndrome
• Heart defect
• Liver defect
• Bowel obstruction

It was too much.  I knew what I needed to do, but I had to process this with Binda. I came home and shared the news with him.  We were silent for a few moments, but he broke that silence with his reassuring, “I support whatever decision you think is best for this family.” I knew that deep down he did not want to go through with this pregnancy.  And I knew on many levels that if we were to continue with this pregnancy, all the burden would fall on me.  Everything from the burden of carrying a sick baby, to the anxiety of what would happen afterwards if this baby makes it, to the struggles of raising a special needs baby while also raising a 2-year-old.  Ultimately, I knew that having this baby wasn’t right for our family.  It wasn’t fair to Ben, who would lose the mom he knew to a lifetime of emotional and financial struggles. I knew I would have to sacrifice everything for this baby, and my relationship with Ben would never be the same. My relationship with Binda would be so strained from the special care for our baby that I knew that part of our family wouldn’t survive either.  I knew what needed to be done, and Binda agreed.  The decision was made, and now it was time to make our plans for what came next. The tragedy of this pregnancy doesn’t end here, but there was a magical thing that happened after we made our decision to terminate the pregnancy, and that deserves its own entry in this lifestyle blog. 

Continue to Part 2 of this story to find out how my 90+ year-old grandmother reacted to the news about the decision we made.

Resources:

For anyone who needs support after losing a baby or terminating a pregnancy, please reach out to the Bill Sweeney Perinatal Care Fund.

And I’d like to add a special note acknowledging all the fathers who suffer losses just like moms, and get devastatingly little support. Please, consider offering just as much kindness to fathers as you would to a grieving mother.