The Scientist

It’s been nearly 7 weeks since I had the procedure to terminate my third pregnancy due to fetal abnormalities; the fetus being “Incompatible with Life.” We’ve received the majority of our test results back now, the exception being our genome sequencing which is going to take months.

1. The microarray came back normal. So, no chromosomal issue. Not surprising to me. The microarray from our second pregnancy also came back normal. We did not have a microarray on our first pregnancy. We have not learned the sex of any of the pregnancies despite the microarray providing this information. We really just don’t want to know.
2. All of my blood results came back normal – B12, folate, homocysteine, all CBC results. All normal. B12 and folate on the high ends of normal. Knowing this they believe the issue is not folate absorption or MTHFR mutation.
3. We decided to participate in the research study at Boston Children’s Hospital and a few weeks ago provided our saliva samples. At this point, as all other testing has been “normal”, it’s believed to be a genetic condition that is causing these issues with our babies. The results won’t be back for months. It’s going to be a long, cold winter of waiting.

We are now a science experiment.

I spoke with Dr. T for about twenty minutes this evening. She’s really just fantastic and called me after hours. She didn’t rush me and took the time to listen to me and explain things in layman’s terms. I can’t speak highly enough of her. One of my first questions was – would there ever be a point where, heaven forbid any future pregnancies were again “Incompatible with Life”, would there be a point where they would not recommend a D&E or not give me that option?  Her answer was NO – she cannot conceivably think of a situation in which I would not be allowed that option. If she had said that it would be too dangerous to have this procedure again and she would not recommend it no matter any “incompatible” diagnosis that would be a deal breaker for me. I really don’t even know if I want to ever try again, but if I did I would need that option open if the worst did happen again. I obviously don’t want to be in that situation ever again, and I would hope and pray that any future pregnancies were healthy, but 100% of my pregnancies thus far have been abnormal and I know nothing else.

She did say that given I’ve had three D&E’s she would want to monitor cervical length very closely if I were ever pregnant again. She also said Asherman’s Syndrome would be a concern, but most often occurs if there was retained tissue after the procedure and I needed a subsequent procedure to remove the tissue. However, given that my cycle seems to be normal (I got my period five weeks to the day after the procedure and my cycle is usually 35 days) she doesn’t think scarring/Asherman’s Syndrome would be an issue. Of course I need to monitor my next few cycles to see if anything changes.

What she is hoping for is that this genome sequencing provides an answer/diagnosis. Then we could go through IVF and do preimplantation diagnosis on the embryos and only transfer the embryos that do not have whatever condition we keep passing on. It’s one thing if the genome sequencing reveals a mutation that we can test for, but 60-65% of the time they don’t find an answer. I’m certain that with THIS I will fall in the larger side of the odds and I’ll just be told to roll the dice again. Even so, she said there is no genetic condition that is inherited 100% of the time. If it’s dominant, there is a 50% chance of passing it on. If it’s recessive, there’s a 25% chance. So it’s just our shitty lack of luck that has resulted in passing this on 100% of the time thus far (as she believes it is a genetic condition.) And as far as trying again and rolling the dice, she mentioned a patient that has had 10 miscarriages right in a row. Testing did not reveal any answers or a diagnosis. Finally on her 11th and 12th pregnancies they were healthy and she carried to term. Why it took 11 and 12 is a mystery and we’ll never have an answer. Maybe for us it could be #11…. or it could be #4. Or maybe we will keep striking out and it doesn’t matter how many times we try.

I wish I had a crystal ball or I could go to sleep and wake up 10 years from now. By then I’ll know how this all turned out and maybe have the answers to all my questions.