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.
IMG_0135

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.

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33 Responses to The Scientist

  1. mamajo23 says:

    What an intense process. I am so glad you have a lovely doctor and hope you can finally get some answers. Thinking of you.

    Liked by 1 person

  2. RJ says:

    So frustrating…so unfair. I’m so sorry you’re going through this and I really hope you can get some answers that will lead you to the outcome you desire. You deserve all the best. Sending you lots of love.

    Liked by 1 person

  3. I wish someone had a crystal ball. I wish somehow you could know the answer to why and how many. I just wish. And yet I am so glad you have what sounds like an amazing doctor on your side and I hope whatever you choose, whenever you choose it is, you finally have your dreams come true. Sending you lots of love.

    Liked by 1 person

  4. Wow. I’m sorry this is so grim and protracted. Seems like “slim but not impossible” is what you’re most likely to hear (statistically speaking). I hope you fall in the minority though I know why you assume that won’t happen given your history. I wish I had something more to offer, do, say. You are in my thoughts and will stay there.

    Liked by 1 person

    • It does seem grim and protracted. I don’t think it really hit me until this morning and all day at work I was just obsessed with it all. I just don’t feel like there is an “easy” way out… and I feel kind of silly even complaining about it knowing what you went through with A. That is truly love and dedication and beating the odds… and at times I’m not sure I have it in me. And yes, those infamous words “slim but not impossible” do seem to be ringing very true right now… I appreciate your kindness and support nonetheless. xxx.

      Liked by 1 person

  5. So sorry to read this (but glad you have a great doctor supporting you). I hope that you do get some answers from the testing so that you don’t have to keep going through this situation. Best wishes to you.

    Liked by 1 person

  6. Mindy Lauren says:

    I am so sorry you are going through this. I really hope you find answers soon. I know waiting is torturous, so I hope the time goes by fast… If that’s even possible.

    Liked by 1 person

  7. Nara says:

    Agh. That sounds so painful and difficult. Thinking of you and sending you hugs. x

    Liked by 1 person

  8. It must be a good feeling, or better feeling to know that at least things are being done, Test’s are completed, and your Doctor really seems to care about you and your well being. I hope that you can take this winter and get back to being “you” again. I know it took me a few months to get out of the fog after my loss, so I can’t imagine three in a row like that. Interesting about that science experiment! I can’t wait to read more on that.

    Liked by 1 person

    • You’re right, it is good to feel like I’m moving or taking some sort of action – even if it is slow as molasses. I want to get back to me too, but at this point I don’t even know who “me” is… for the past *almost* two years I have been this person consumed with loss and grief. Who am I if I don’t have that? I don’t remember right now but I guess I should find out. Thanks for your support ❤

      Like

  9. mamaetmaman says:

    I’m so sorry for all of your losses and no explanation as to why they’re happening. This doctor sounds very supportive though, and I hope the sequencing reveals something that you can work with.

    Liked by 1 person

  10. So sorry you didn’t get an answer yet. I really hope they figure out something so you don’t feel like you’re just rolling the dice. It’s awful.
    I’ll just like to add that in my ‘research’ on MTHFR I read that often if one tests for folate everything seems fine, but it’s not, because there’s a lot of folate in the blood but the body can’t use it properly. I’m sure your doctor is much more knowledgable than I am, just thought I should share in case you want to discuss further with them.
    Thinking of you!

    Liked by 1 person

    • Thank you for your support. ❤
      As for the MTHFR, it's not only the folate but also the homocysteine levels as well, and because both were normal and homocysteine was not elevated they do not think there is an MTHFR issue.
      I appreciate your support. xxx.

      Liked by 1 person

  11. Hugs. Not having answers must be so hard, especially after three (!) losses.
    I’m hoping for better news for you, one way or another.

    Liked by 1 person

  12. I wish I could tell you what the future holds too. Its so unfair. All of this process. Prayers as always.

    Liked by 1 person

  13. I’m so frustrated for you, reading this post all the anxiety I had about not knowing WTF was going on came rushing back, and imagining what you are going through…I feel for you. But I know that you will persevere. Hugs, XOXO

    Liked by 1 person

  14. I am glad you have a good doctor. Makes all the difference in the world.

    Liked by 1 person

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