When we got the blood results back at 14 weeks that our precious baby was high risk for Trisomy 18 we were heartbroken. We just had a miscarriage five months ago and now this baby had a high chance of not making it. I constantly asked Dillon, “Why us? Why couldn’t we have a perfectly, normal baby?” But the thing is, we had a perfect baby. She was God’s perfect gift to us.
Our anatomy scan wasn’t until 20 weeks. For 6 weeks we thought that maybe this test was a fluke. What if we were the few out there that had a false positive. I searched on Google for hours, every day; “False Positives on Materni 21 Test”, “Positive Materni 21 Ending in Healthy Baby”, “Can The Materni 21 Test Be Wrong?”. You name it, I Googled it.
When we arrived at our anatomy scan we were nervous and scared. It took a little over an hour for the tech to get all of the pictures. When the doctor came in he didn’t have a good look on his face. We simply told him to not beat around the bush and just tell us. Our baby had a VSD, clenched hands, HLHS, microcephaly, rocker bottom feet, cysts on the brain and she was overall measuring small. He asked what our thoughts were about aborting and we told him there was no point in talking about it because it wasn’t an option. We asked him how long we would have with her and he said with babies like ours there is no estimated timeframe. Most Trisomy 18 babies usually do not make it to birth and if they do they might live up to a week. We weren’t sure how to feel after we left after that appointment. When were we going to have to say hello and goodbye to our daughter?
We had a follow-up appointment at 24 weeks and another one at 27 weeks. But things started changing at our 27 week appointment. Our doctor decided to have a pediatric cardiologist get a better look at our daughter’s heart. It took over an hour for both doctors to do the ultrasounds, our doctor looked at her overall organs and growth and the cardiologist did an in-depth ultrasound of her heart. When they were done they both shook their head. Again, we asked the doctors to not beat around the bush. They began to say that all of those things they previously found were no longer there. She didn’t have a VSD, the cysts were gone, her head and body were measuring on track, her heart looked normal, her feet looked fine, and her hands were opening. Um, our baby is normal? So the blood test was wrong? Our doctor wasn’t sure what to say and then asked if we would like to do an amniocentesis for an exact diagnosis. He was nervous that there could be something else wrong with our daughter and he just couldn’t see it. We decided to do the amniocentesis for peace of mind and to truly know what we were dealing with.
It took a few days to get the results back. Those days felt like years. We constantly kept asking ourselves “What if she has this?” or “What if it’s positive or negative?”. I finally got a call from my doctor, the test was positive for Trisomy 18. At this point, Dillon and I finally accepted the fact that our daughter has Trisomy 18 and there was nothing we could do to fix it or change it.
I had one last ultrasound at 34 weeks to see if anything changed. Our daughter’s growth was below the 10th percentile. My AFI was also at 39 (AFI is the amniotic fluid index, the fluid that floats around the baby. A normal AFI ranges from 8-18.) which is why I looked like I was carrying twins. It was still confusing on why our daughter didn’t have any other markers. When you Google Trisomy 18 markers there’s a ton of markers! We then thought, “What if the amniocentesis is wrong?” I Googled many times “How accurate are amniocentesis?” Every answer I found always said, “100% accurate”. After a few days, I finally told myself, it is what it is. I was making myself miserable with Googling every little thing. I knew deep down that no matter what, we would have a for sure answer whenever she gets here.
I started to see my OB weekly to monitor our daughter and to make sure she still had a heartbeat. We also met with a chaplin to go over our birth plan. How do you write a birth plan for a baby that may or may not make it? Our birth plan included moderate interventions. We wanted her to get oxygen if she needed it but we didn’t want to intubate her, nor did we want to put her on any kind of long-term life support. We also had to go over what we wanted if she was stillborn, which included holding off on weight/height measurements because we would want to hold her until it was time to let her go.
For the next 6 weeks we waited. And then it was time to get induced…