This has been hard. So effing hard. Pardon my French, but this has sucked in a major way.
Two weeks ago at my ultrasound (I briefly mentioned this here) we did the initial screening for chromosomal disorders. This first screening, for those of you that have never had it – I hadn’t with either of my first two kids – is just a little thing that the ultrasound tech looks at during your first ultrasound, around 12 weeks. So the tech (the same one I’ve had with all my ultrasounds with my other pregnancies) found something (whatever measurement it is that they take) that indicated a “risk” of having an issue, and said that I should have the second screening, which just involved a quick blood draw that day, and I’d get results in a week or so.
That second screening came back (three days later, mid-shower, on a very busy morning, with very little time to process) with a likelihood that the baby has Trisomy 18.
If you (like me) don’t know anything about it or have never heard of it, here’s what the Trisomy 18 foundation says:
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction. Trisomy 18 occurs in about 1 out of every 2500 pregnancies in the United States, about 1 in 6000 live births. The numbers of total births increase significantly when stillbirths are factored in that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independently without assisted caregiving.
Cliff’s notes: This is bad. High risk of miscarriage. High risk of still birth. High risk of infant mortality. Unlikely for my baby to reach his/her childhood years, much less reach the other side of them.
My doctor (aka my hero – read my birth stories!) encouraged me to get a (very expensive but worth it) blood test that would give us 99.9% accurate results as to whether baby has Trisomy 18. So there I was, having taken a test that will tell me for almost certain whether or not I should be worried for the next 6 months, whether or not to even get excited about decorating a nursery and buying a new outfit or two, whether or not I will have just moments with my sweet child or years. How can a woman possibly be expected to hear this news and do anything but stay in bed all day (several days!) and cry?
As you might expect, I’ve been an emotional wreck. I’ve been vacillating between crying and yelling and being silent and praying and pretending I’m fine. I’ve been on an extremely short fuse, what with being cooped up from the cold, cooped up in half our home, and bearing the unbearable weight of possible bad news.
So I’ll spare you the waiting and waiting that I’ve gone through.
My doctor called yesterday late in the afternoon, as I was lying down to nap. When I saw the caller ID, my heart stopped in my chest. I knew it was the moment of truth. My world could either continue turning, or be shattered for the foreseeable future. I’d been waiting for the call, and now I wasn’t sure if I could answer.
But I did… and he (thankfully, prayerfully and PRAISE THE LORD) told me the test came back negative for Trisomy 18 and other chromosomal disorders, and that the baby is normal. THE BABY IS NORMAL! Has anyone ever been so happy to hear about “normal”?! I don’t know. But I sure was ecstatic and overwhelmed and unable to even respond. I just sat and cried on the phone.
The waiting, my friends, is indeed the hardest part. It’s seemed like an entire lifetime I’ve waited to hear these results, barely breathing, much less going on with life, until I knew how to proceed. My thoughts were consumed, I didn’t stop for a moment to pray for anything else, and I just zombied (yeah, it’s a verb) my way through a week and a half of life, waiting to hear whether my family would drastically change in a good way or bad.
So please, rejoice with me, even though I didn’t share the extent of the situation until now. If I kept it from you, it wasn’t because I didn’t want to tell you. It’s because I didn’t know how to say it. The situation has been redeemed, as Jesus has a knack of doing. My fears and anxieties have been put to rest, and I have a peace in my heart that surpasses understanding. Jesus wins, Jesus saves, Jesus heals and Jesus answers prayers. I am so thankful that I had Jesus to turn to.