To say that this past Saturday was a rough day would be an understatement. Saturday was the day I encountered the very scary side of pregnancy first hand.
My cell phone rang at 11:30am and I saw my OB/GYN’s phone number pop up. Being 12 weeks pregnant, their number is one I see pop up quite a bit on my caller ID. I assumed it was an automated message about an upcoming appointment with my specialist to talk about my sugar levels, so I picked up the phone.
It wasn’t an automated message. It was my doctor. Not my doctor’s nurse either. MY. DOCTOR.
“When your doctor calls you on a Saturday, it probably isn’t good news”
Let me tell you – when your doctor personally calls you on a Saturday, it’s probably not good news.
I had requested the chance to do the NIPT prenatal testing as early as possible so we could find out the gender right away. I was so eager to find out if we were having a boy or girl! This mama has to plan things, ya know. I wasn’t even concerned about any of the genetic testing. Jameson is perfectly healthy and his screening indicated so.
I had a huge scheme in mind to pick up the top secret gender info in an envelope, deliver it to a local baker and be surprised on the family Zoom call along with everyone else. Never once did I expect the news I received yesterday morning.
Abnormal Screening Results
“Your prenatal test came back abnormal.”
I actually misheard it the first time. I thought she had said “normal” and was going to follow up with asking me how my sugar levels are. But when she asked if I had a second to talk, I stalled for a second. Still, the gravity of what she was about to tell me hadn’t sunk in yet.
As she continued telling me the news, the world around me started to feel like a bad dream. Like time was standing still and the walls were moving in on me at the same time.
Cue the Scary Side of Pregnancy
My hands started shaking.
I couldn’t breathe.
My husband was upstairs and Jameson was in the high chair snacking on cheese.
“Your test results indicate a high risk for Trisomy 21, which is Down Syndrome.”
I immediately fell into a state of shock. I listened, but words escaped me. Tears escaped me too.
After a bit of talking with my doctor, who is unbelievably compassionate and so kind, we hung up and I had to break the news to my husband. Halfway through telling him, I finally lost it and started sobbing. I haven’t stopped crying very much since.
What It All Means
There is a 76% chance that the blood test screening was accurate and our child does indeed have Trisomy 21. This clearly leaves a small chance of a false positive and my doctor did tell me that she experienced one with one of her patients. Her baby turned out to be just fine, which they were able to confirm with an amniocentesis.
I can only think back on the details of her story to help me hold onto hope – hope that the scary side of pregnancy will not last long for us.
We are scheduled for an ultrasound with a specialist tomorrow afternoon to get a closer look at the nasal cavity and neck thickness, which apparently are soft markers for Down Syndrome. I will also have the option of a Chorionic Villus Sampling (or CVS), which I will probably decline.
If all of that looks ok, the chances of T21 go down significantly. Either way, we can definitively confirm whether or not there is a positive diagnosis with an amniocentesis around 16 weeks gestation.
Facing It Alone
The hardest part of all of this is that I will likely have to face all of this alone because of COVID. I know with certainty that my husband can’t come with me to the ultrasound. I’m imagining the same will be true for the amnio. As if this wasn’t hard enough.
And then there’s the worry of knowing my private insurance that I purchased doesn’t cover maternity. At all. (My insurance rep lied to me on that one, but that’s a story for another day). I was already panicked about the medical bills for a pregnancy without a high risk factor. This is just overwhelming.
I’ve been struggling with this much worse than I could have ever imagined. I’m going through such a carousel of emotions – sadness, grief, shock, anger, rage, hope, and everything in between.
I pace back and forth aimlessly. I lay in my bed and just stare at the wall. I burst into tears randomly.
Part of me wants to bury myself in work and the other part of me just wants to cuddle my son all day long and turn off the world. All of me wants to sleep all day and night.
I want to get in the car and drive to a new destination for a long getaway and pretend none of this is happening.
I want to be alone, but I also desperately want to be surrounded by all the people I love.
The first thing I thought was that I wanted my mom and dad. But other than my husband, son and stepkiddos, I am here in Tennessee alone. The rest of my family lives in New Jersey.
My depression that I’ve been struggling with for a few years now has caused me to retreat. I haven’t ventured out here in my newfound home state to make many new friends and the ones I have made, I haven’t done a great job of keeping up with. Sometimes the thought of doing so causes great anxiety for me. I should probably talk to someone about that.
I miss my family. I miss the friends that have known me since my formative years – the friends that knew me before so much of the hell I’ve gone through in my life and remember the softer, less jaded version of me. In a way, I feel like they helped me keep that version of me alive.
No one knows how to comfort you like your family and your oldest friends when you’re facing the scary side of pregnancy.
Nothing is definitive right now and I feel broken. I’m praying like crazy for a false positive. Not because I would ever love my child any less or any differently, but because of the health factors. Because I would have an extremely high risk pregnancy and could lose her at any time. Because I wouldn’t want her to face this cruel world and have life be harder than it already is for a developmentally typical child.
I don’t want her health to be so fragile. And I want to ensure she is able to do all of the things in life she desires.
And, yes, we are having a little girl. I’ve decided to forego the big surprise considering the latest developments.
Please keep us in your prayers. I don’t know how to pray about this right now, so I need all of my prayer warriors to act on my behalf.
I’m talking to God in the best way I know how. Im not sure that it’s prayer, but it’s a conversation. I’m asking Him for angels to enter our life and guide us through this tough time, regardless of what the diagnosis is (although I am 100% asking the Lord for a false positive).
I feel like Lilo in Lilo & Stitch when she prays:
“I need someone to be my friend. Someone who won’t run away. Maybe send me an angel. The nicest angel you have.”
That’s my request from God today.