Words We Never Want to Hear Again

Nuchal Translucency. But before we get to that, so much has changed since October… well since September, really. Quick rundown: Sept – found out we were pregnant, Oct- doctors put us through an unnecessary scare with more unnecessary testing and continue to tell us something is wrong, though no test confirms anything is wrong, Nov- I got a new job at a very large company. Every day is new and terrifying but I continue to go and try and be present. Then the holidays hit. And pretty much here we are! So, what leads me to wanting to write? Probably a quick rundown of the things that I’ve been put through in pregnancy that I want to save other women from because it has done nothing my cause me and my husband stress, anxiety and anger. If one expectant mother reads this and it makes a difference for her, than I’m happy.

Back at 13 weeks (14 weeks ago) Steve and I decided to do the genetic testing through our doctor’s office for our baby. Not for a moment were we having the testing done to determine if we would keep the pregnancy but instead to educate ourselves on how, if our child was faced with a disability, could we give them the best life possible. We went in for a 2 part test. First part is an ultrasound, second part would be a blood test. Sounds easy, right? Well that’s what we thought too. We didn’t even make it to the blood test. That was never even offered to us. The ultrasound went fine, we were then taken to a room to wait to meet with a doctor. Only moments later were we asked to come back to do another ultrasound, this time trans-vaginal, for a “quick picture”. After this we went back to the private room to wait for the doctor and a couple moments later the nurse practitioner came in to meet with us. You see why “doctor” was bolded now, don’t you? Her first words to us were “I’m sorry but we found something.” With that short sentence, our world came crashing down around us and everything she said after that was a blur. The nurse told us that our Nuchal Translucency score was 4.1 when “normal babies range from 1-3”. Our baby was from then on, separated from “normal”. Our baby could be suffering from Downs Syndrome, Edwards Syndrome, Turners Syndrome or a cardiac defect. We would need further testing to determine which. We were told our only options were a CVS or an amniocentesis. Both procedures would test fetal DNA to determine the exact disability our baby was suffering from. We would be scheduled at the University of Michigan because they could do the “procedure”. The nurse then rushed out to schedule this for us. We sat there. Silently. Everything was silent except that clock on the wall which was tortuously loud, as if the volume had been turned up to torment expectant parents while they waited for results. The next nurse came in immediately apologizing for asking me my date of birth and maiden name, her face marked with sorrow, like we were just given a death warrant. So when we left there, we didn’t speak. We didn’t know what to say. We were told our baby was damaged and  now we were faced with a long list of medical interventions, my nightmare.

Our day came (on Halloween, ironically) to get our “procedure” done. Steve and I took a half day from work and navigated the complicated network of one way streets, parking garages and elevators to get to the fetal diagnostics floor. My man, ya’ll is a rock. He is there for everything. And I am so glad he was there for this. I wouldn’t trade him for all the money in the world! Anyway, the appointment was a 3 part appointment. First we met with the genetic counselor. This woman was the best. She asked us how we wanted the information. She sat down with us with numbers, statistics and diagrams. She explained that our NT score did not 100% determine a problem. Even with an escalated NT score, we had a 70% chance of having a totally healthy baby. Then she discussed all potential issues we had been told about. Even after hearing of each one in detail, we felt more calm, empowered with knowledge, not just filled with fear. She then went over our options for procedures: CVT, CVS, amniocentesis or… A NON-INVASIVE BLOOD TEST!! Hallelujah! Each of the procedures carried a risk of miscarriage, except the blood test so we opted for that, because we hadn’t been told that was even an option until now. Then we went for part 2, the detailed ultrasound. The ultrasound tech was educated, patient, funny and comforting. Not at all scary and doom and gloom. After about 45 minutes of watching Bean, move around while she took all her measurements we met with the ACTUAL fetal diagnostic specialist doctor. He told us that the highest number they could measure was a 2.5 and the heart seemed perfectly functional and fine and “we had nothing to worry about”. While we understood that NT scores fluctuate, he said that it went in the right direction and all of the additional testing we had been told we would need was unnecessary. We should continue with routine scans and check-ups. The third and final piece was the blood test. We went down to the lab. I gave a few tubes of blood and we would get results in 7-10 days. Well, fast forward, our results came back with a “less than 1 in 10,000 chance” of any of the mentioned syndromes that we were made to believe was our new reality. We were so relieved!

But it wasn’t and isn’t over. Even though every single test and checkup we’ve had since, has been normal we are still being faced with constant rigorous “recommended testings”. After our 20 week anatomy scan, we were told that we should have a fetal EKG. Not because they detected anything but because so many weeks prior, we had an escalated NT score. My husband and I decided, after talking to a nurse, that we would not have an EKG, so long as things continued to progress normally. The nurse had said there wasn’t anything they could do in pregnancy anyway, it was more for “preparation for the doctors in birth”. We felt confident with our decision as we’re having a hospital birth. Then a few weeks later, at our next appointment we were told that the doctor’s office that did our original testing that told us so many things were definitely wrong, recommended also having another detailed ultrasound at 32 weeks and starting a regimen of non-stress tests 2x a week until birth… I lost it. It is clear that one number has haunted our entire pregnancy and made the whole experience terrifying and riddled with fear and anxiety. So now, we are faced with more decision making. We’ve decided to have the ultrasound but skip the non-stress tests because it’s more hazardous to drive 2x a week from work to the doctors (45 minutes without traffic) in the middle of winter and then again 45 minutes home in the dark … in the winter of Michigan. So if the ultrasound looks normal, we will be living our lives the best we can until she’s here. Oh yeah! And we found out it’s a girl. So there’s that, mixed in in all of this.

So here’s my take on all of this, Mamas. I originally consented to the genetic testing with the mindset of preparing for my child’s abilities, no matter what that looked like. Now I’m realizing that I was burned and that this test has caused me more harm than good. Is there still a chance something is wrong? Absolutely. But nothing we’ve seen has backed that fear up. If we would have known that this would haunt us and make this such a miserable, fear-riddled experience we would never have done this to ourselves.

The biggest take aways are this: advocate for yourself and your pregnancy, first. The doctors, while pushing further testing on us have always ended our interactions with “it’s still your pregnancy and your choice” (is it really though?) YES. It is. You have the power to start making parenting decisions before your baby is even here. Exercise that right, do what you feel is right for you and your baby. My next piece of advice to come from this experience is this: if the results of this test will not affect your decision to keep your pregnancy and your baby and you don’t have history of these issues, I would seriously advise you to think about not taking this test, or at the very least what the results could do or mean for you. For your sake. I wish I could tell myself that to have prevented all of this. It’s not worth it. It never was. No matter what the outcome. Be your own advocate. Doctors are not bad people but only you as a patient can advocate for yourself.

Be strong Mamas. Listen to your heart and your baby. I know mine has been doing tummy aerobics while I’ve been writing this. Almost as if she’s reaffirming that she’s in there, she’s strong and she’s ready for her break out (in a little more than 13 weeks). Good luck and congratulations!!