Nuchal Translucency Testing Results & Fears For Baby
Nuchal Translucency Testing Results & Fears For Baby
(Our story, our outcome, and the truth behind the results of NT testing.)
My beautiful girls are 4 years, 3 months, 3 weeks & 1 day old.
I remember it like it was yesterday. I was lying there in the doctor’s office getting a typical NT scan during a previously routine pregnancy. Baby B was looking well, but baby A, I saw the tech call in the doctor to consult. This was a new one on me. I don’t remember such testing back with my boys, but I knew I had it with my 8 year old, and I was never really scared by it. More so I was looking forward to getting a longer look at our baby, in this case babies. This time it was different.
What is a Nuchal Translucency Test anyway? Well, essentially it is a longer, more detailed ultrasound of your unborn child that poses no risks to you or your baby, and it is usually done at an average of 12 weeks gestation (11-14 weeks max.) The technician or doctor takes a measurement of the clear (translucent) space in the tissue at the back of your developing baby’s neck. Babies with abnormalities tend to accumulate more fluid at the back of their neck during the first trimester, causing this clear space to be larger than average.
These images show the thickness in the ‘behind the neck’ area that is measured during a routine NT scan.
Again, this test is timed at around 12 weeks (3 months) of pregnancy, but may be done at 11 weeks – 13 weeks 6 days gestation (essentially 14 weeks) maximum, or the results can be altered and not trusted. The area is said to be most translucent during that 11 week time period. Be sure you have this test done during this time to potentially avoid unnecessary worry, as mistakes can (and have) been made.
Anyway, I remember the doctor looking at the ultrasound and measuring the neck of baby A for herself. She looked at me and said that the measurement of one baby was quite higher than normal for the gestation and could potentially mean Down Syndrome or other chromosomal abnormalities, along with possible heart conditions. This is in the most extreme case of ‘what ifs’, but she did mention the possibility to me.
Your age, which mine at the time was newly 34, your baby’s gestational age, this measurement, and in some cases (when checked at the same time), the absence or presence and state of the nasal bone is factored into the mix. I don’t remember any mention of the nasal bone that day, but I was nervous enough just hearing something wasn’t right. I blocked out most everything else. Very obviously, my Allie does have a perfect nasal bone, but they may check for this at that time. You may or may not even realize it.
I was 10 weeks & 6 days pregnant when I was in the office that day. With every passing day I was told that the thickness of this space gets larger, not the other way around. So basically, my baby A’s measurement was bad at the very earliest time to have the test. What would it be days or a week or two from that point then? I was really scared. This is what I want all of you to know out there before I finish my story. An abnormal screening result (a positive screening) does NOT mean that your baby has a chromosomal problem like Down Syndrome AT ALL. It just means that he or she is more likely than average to have a problem. Odds are still stacked in your baby’s favor. In fact, most screen-positive babies turn out not to have a problem and are completely normal babies. What did I know at the time? I wish I had heard that then and there, but I didn’t.
I was in an esteemed hospital, and the doctor offered me, just based on this before any blood work or further test results came back in, the offer of a selective reduction with one of our twins because twins were risky enough as it was 😯 . That shocked me. That wasn’t happening ever, unless we found out our child had something in which their life would be an absolute nightmare. Something incompatible with life, or a definite torture and death sentence. Both me and hub agreed on that after having watched my own ill child suffer for years and then pass away. It was the most torturesome experience in my life. Something no child should ever go through. But not for Down Syndrome or something of that nature. I would like to be aware though. I was kind of shocked she even brought up that subject without further testing. Of course, we quickly said, ”No”, but how much more did that scare me that day? A LOT!
She then offered us CVS testing, which I really wanted anyhow with two in tow and after losing my son. It could be done that day, so we opted in on that. I couldn’t wait for an amnio as I was a total worry wart. I’d never have survived the wait. Certain pregnancy screenings such as the Alpha-Fetoprotein Screening, isn’t always accurate with multiples, so I decided to get the testing done that day. I knew she did the CVS testing with twins (and well) and was hoping for it anyhow.
A few days after, all I had were two little band-aids. No bleeding, cramps or problems of any kind.
I had to wait a few days for the results, which was torture for sure. I was reading online trying to figure out what could be wrong, what our chances maybe were. I kept remembering that I was on the low side ‘time wise’ for the test, and so the thickness was growing by the day. That must have meant something bad, no? I got to know the numbers behind the test through my research.
A normal amount of fluid in the back of the neck during ultrasound means that it is very unlikely your baby has Down Syndrome.
- A normal measurement at 11 weeks is up to 2 mm.
- A normal measurement at 13 weeks, 6 days is up to 2.8 mm.
These results are with a timed perfectly test and a perfect technician behind the wheel. If you are doubtful in any way ALWAYS get a second opinion and/or further testing.
(FYI- Your LMP and/or due date can be off just ever so slightly, and it can affect the test results!)
Allie was at 2.9 mm at 10 weeks 6 days. It didn’t sound very promising. Annie’s measurement was much less. (I wish I could remember just to compare, but there was a huge difference. Maybe 1.4 or less. This naturally scared me more.) I did read stories of higher measurements turning out just fine, which helped me as I waited for our CVS test results. However, even the measurements in the 3’s or 4’s (some stories even higher, as much as 7 mm) that had turned out to be nothing at birth, though comforting, were always taken at a later stage then when our test was done. With each passing day her fold was supposedly getting thicker. Not good to think about, hey? Not at all. What might it be at 13 weeks then? That made me most nervous I think.
So the CVS testing on both babies came back. The phone call had me shaking. I picked up the line, and 1st I found out that we were having two baby girls. My dream come true for twins, but would this news be good news for one of those little girls? YES! No Down Syndrome, a perfectly normal panel of test results for both babies. CVS and Amniocentesis are full-proof. I knew I could rely on these results.
I was relieved, but were there times throughout my pregnancy where I still thought about this neck measurement thing? Yeah. But having had the CVS test, which is definitive, and not being held out in limbo until delivery was a godsend. I could never have made it. My regular OB/GYN took a peek at the NT measurement of Allie later in the pregnancy only because I had asked. It was totally and completely normal. It may have been done too early on me, dates could also have been slightly off as mentioned above. UGH! It sure gave us a scare regardless, but it turned out fine. Nothing present at birth to see. She was perfect.
Later on in the pregnancy we faced the unexpected stress of an Echogenic Focus on the heart of the other twin. It wasn’t long after things had just settled down, and I was starting to relax. We went through a couple of pricey and stressful pre-natal echocardiograms, so it was a worrisome pregnancy in some ways. However, you can see the beautiful end result.
Two lovely, healthy, perfect little girls. No problems of any kind. I’ll talk about the Echogenic Focus (bright spot on the heart) on baby B another time. I just wish I hadn’t stressed so much about these two things, but it is your baby or babies. You can’t help but worry about everything big or small, because you just don’t know. I just hope that this article can maybe make somebody out there worry less!
Please do know if you are in my place right now, odds are greatly on your side for the same outcome – a positive one. Take some deep breaths and remember this please. Also, I do highly recommend further testing for peace of mind. I was in a hospital with one of the lowest miscarriage rates in the country, one of the best doctors for the procedure. This makes the difference. No ill-effects from the CVS testing at all. Was I still nervous? Of course. These were my bubs. But was I glad I had it done and got my answers? You betcha!
I wonder how many people get high measurements, no further testing, and decide to end the pregnancy just based on a number that does not always mean anything? I hate to think about it, but I hope that number of people is very, very low.
My friend was told by her doctor that her daughter had Down Syndrome and uneven leg and arm lengths during an ultrasound. He saw her regularly for extra tests, and he never took back his diagnosis. She was quite young (22) and wasn’t even completely sure how he came to this conclusion. However, he was the doctor. Like many people would, she believed him. She pondered termination, but she did not go through with it. She kept up with the pregnancy but with daily fear. The baby was FINE! The limbs were NOT uneven at all either. (UGH!) Poor girl!
My perfect twins as infants!
Doctor’s can screw up, misdiagnose, or think they know so much (because they are Gods..NOT) that they speak too soon. Just like one of my twins had died prior to 9 weeks. Um, I have twins downstairs that would beg to differ BOTH children alive and well, but the doctor was too arrogant to even take a second look. She was just gone. You should have seen his face when she came back from the grave days later. They never admit to their mistakes, but do trust me.. they make them. Just offering some hope in general today. If you have any questions, don’t hesitate to contact me.
Oh, and my best piece of advice, look on this website only! Don’t play ‘let’s search Google’ on any of these subjects. (That goes for most things, but I’m talking about pregnancy testing and NT measurements and Echogenic Focus.) The doctors’ all warned me, I didn’t listen and lost years off of my life expectancy for it. Believe me, the war stories can be scary, some are not even real (yes, people do lie to scare others). Also, the good stories? Not many look back and care to share after the fact, but they are out there. Most of these people have simply moved on with their lives. Just DON’T DO IT!
Hang in there mamas!