I’ve recently become acquainted with a children’s book about the loss of a baby sibling. It starts out: “On the day it happened, everyone woke up happy.” That describes the morning of our ultrasound pretty well. September 1st was a normal day: Daniel was cute as always, Joanna took him to Grandma’s house, and I brought the car in for an oil change. It felt like any other day.
We went in for Joanna’s 20-week ultrasound, to determine the gender of our baby and do an anatomy check. We had already had an early ultrasound to determine his due date and had no reason to suspect anything out of the ordinary.
Our ultrasound technician was chatty and friendly; she reminded me of a former coworker. We had Daniel with us and he got pretty squirmy, so I took him into the hallway to explore. Playing with the water fountain was the highlight of our travels.
I missed the gender announcement (it’s a boy!) when we were wandering, so when I returned they recreated it and pretended it was the first time Joanna was hearing the news. It was nice of them to humor me.
The first inkling of a problem was when the tech was leaving the room: “The doctor will review the images and be in to talk with you soon. There are a few structures she’ll want to look at.”
I tried to not be nervous as we waited and convinced myself it was probably nothing. Daniel moved around quite a bit during his ultrasound, and it must just be something like that.
A few minutes later a nice woman walked in and introduced herself as the doctor on site that day. “We need to talk about your baby. There are a number of abnormalities in the images we took today.” She started to list them: his facial structure is flattened, the brain is being pressed down, spine has a hole at its base, the heart isn’t formed correctly, intestines are protruding from his abdomen, hands are clubbed over on themselves. There were even more problems she shared later.
The doctor said these signs are often indicative of a chromosomal anomaly. She specifically suspected Trisomy 18, which is a tripling of the 18th chromosome. Further testing would be needed to confirm this diagnosis; an amniocentesis is the surest way to find out, but it carries a small (<1%) risk to the pregnancy.
Trisomy 18 creates a myriad of physical issues, as well as major developmental problems. There’s a significantly increased risk of stillbirth, and if our little guy is born alive, chances are high he’ll only live for days or weeks.
Joanna and I were in shock. Our two-year-old Daniel just spent four days in the hospital last month after being diagnosed with type 1 diabetes. Now we were being told more bad news by yet another doctor.
We decided to do the amnio that day, so we could have a sure diagnosis as soon as possible. If you don’t know what an amniocentesis is, I’ll spare you the details. A quick summary is: picture a 4″ needle being stuck into your pregnant wife’s abdomen, and the doctor drawing out a few teaspoons of amniotic fluid. Joanna was a trooper.
We left after making plans with the doctor for more followup and to await the test results. The following days were filled with many conversations, tears, and reading about this disorder I had never heard of. Life took on a bit of a tunnel-vision effect; I could think of little else, and many other areas of life seemed to lose their importance. Even Daniel’s diabetes diagnosis – such a recent and major life event – receded into the background of my cares and concerns.
Since then things have gotten a little better, although I can’t say this journey is awesome or anything. We’ve had some time to learn about Trisomy 18, and we’re starting to understand what the coming months might look like. Joanna hasn’t miscarried right away or anything, and we’re starting to settle into a new kind of “normal” life.
I wish this wasn’t our story, but it is. I feel close to Joanna, and we pray, cry, and talk together about really important things more than ever before.
We also feel extraordinarily loved by so many people in our lives. From cards arriving in the mail, to offers to watch Daniel, to friends wanting to listen and cry with us, it’s been incredibly reassuring. I knew people cared about us before; I feel it tangibly now.
Thank you for walking with us on this journey. We don’t know where it will take us, but we’re glad to share it with you.