I received a call from our genetic counselor today with the results from our nuchal translucency test. The results place me at about the same risk as a 20 year old for having a child with Downs (1 in over 3000) or Trisomy 18 (1in over 6000).
At first those statistics were comforting. Then I started thinking about the odds for having a child with ACD – approximately 1 in 100,000. It was such a low risk that the doctors didn’t even mention the possibility that Joey’s hypertension could be caused by that for over a week.
So the ratios I received today are excellent when compared to the standard risk for a woman delivering a child at age 37. But they aren’t entirely comforting when compared to the odds that we have already confronted. Again it just emphasizes how I will never again be naively blissful as I understand too well the risks.
Our visit with the genetic counselor went well today. The test results from Joey’s tissue suggest a very small risk of repetition. Mosaicism is possible, but not likely. We were told that we could elect a CVS or amnio to know for sure, but both carry the risk of miscarriage and given the odds, it wasn’t necessarily a risk we were willing to take. We decided that if the nuchal translucency results showed risk of genetic disorder and we elected to have a CVS or amnio based on those results that we would add the test, but that it wasn’t worth it alone.
Fortunately, the ultrasound showed a definite nose bone and only a very small pocket in the neck. We’ll need to wait for the blood work, but the ultrasound indicates a healthy baby.
We told our son this morning. He was very excited. He told both his teachers and shared the news with my family at the dinner table by saying, “we’re going to have another baby.” He thinks it will be a boy-we will see! He’s been right about a lot of things so far!
In less than 12 hours, we will be seen by maternal fetal medicine for our nuchal translucency screen. With our first two children, this day was exciting. We didn’t consider really the risk of there being anything wrong – we just viewed it as a chance to see our precious little offspring. And it is still exciting, but it is also met with fear. We aren’t as naive as we were expecting the first two. We did the right things – took folic acid, ate the right diet, didn’t drink or take over the counter meds. I was in good health. Surely nothing would be wrong with the baby. And for the first two pregnancies everything appeared fine. Our first son was born healthy eight days early; our second had test results that showed no abnormalities. Even the additional tests that were run in the third trimester because I wasn’t able to keep food down showed nothing out of the ordinary. So when I went into labor two days before my due date, we expected to bring him home on schedule and without incident. But that didn’t happen. His lungs had not formed correctly in utero. He was not able to breath outside of the womb. He died in my arms 13 days after he was born.
When we learned that we were expecting his sister three months later, we were overjoyed, but also scared. The lung condition that our son died from is considered a genetic condition and it is so rare that very little research exists. She was born two weeks early, on Christmas Eve 2010 – less than a year after her brother. The best Christmas present ever.
Which brings us to tomorrow. I am ecstatic to see the little pea pod – but I also have a healthy sense of fear. We received the test results from the tissue of our second child, and the risk of repetition appears small. But I am still not the naive mom who was expecting baby 1 and baby 2. I know too well that unforeseen things can happen.
I also know too well that when you lose a child that it seems like such a taboo thing in our society that people no longer speak of the baby who died. The people who I have so far told that we are expecting have referred to the baby as our third – but he or she is not. Our little girl is our third and this little one is our fourth. I do understand that this little one will be the third who is coming home, the third who will experience any holiday beyond Martin Luther King Day, the third who will go to kindergarten. And I also understand that even as I type that there is no guarantee that this child will do any of those things.
But I do guarantee that this baby is loved, just like his or her two brothers and one sister.
I chose the title to this blog because I like to think of all my children as angels – I am lucky enough to hug and kiss two of those angels every day, I will hopefully be able to hug and kiss another in July, and I am saving an overwhelming number of hugs and kisses for my baby who watches over me and who my desire to see again makes me want to be a better person.