Breathing… Lots of Deep Breaths

I’ve been quiet lately, I know. Passing out most nights at 8:30 pm is not so conducive to blogging.

But there’s another reason too. Deep breath.

Here we go…

Remember one of my first posts when I spoke with my doctor about the importance of not being matched with a couple who has the same antibodies that I developed a resistance to during my second delivery? My blood could basically attack the baby’s blood during the pregnancy causing all kinds of problems, so we needed to avoid that situation by testing for it in advance.

I let the agency know, and of course it was in my medical records too. I was matched with Vivianne and David, and I thought I’d bring it up again when I got to my medical screening at the fertility clinic last spring.

“So, I assume everything is okay with the antibody issue, since I haven’t heard anything otherwise?” I said to the doctor. He froze. He gave me that sweet-but-tentative smile-and-nod that someone gives you when they don’t quite know what to say, and he said they’d be sure to follow up on that. And in a shaky sort of way, he quickly moved on to the next topic. As I later found out, the clinic had never even reviewed my medical records prior to that appointment, so he had no idea about the concern.

It’s okay, they said. They’d do the blood screenings to make sure neither the egg nor the sperm would contain those antibodies, and we’d hope for the best. A few weeks later the clinic contacted me saying that they were both negative and we were all set to move ahead. Phew!

Fast forward… embryo transfer, pregnancy confirmed, first appointment with OB who said, “So that’s great that they were both negative. Can you have the clinic send over the details of the blood work so I can have it for my files?”

And about three weeks ago, on a Tuesday night, those details came through. I opened it up, and couldn’t believe my eyes. Right there, in black and white, it said, “Antigen identification panel: c – POSITIVE.” I figured I was probably losing my mind and that I’d try to stay calm until I could reach my doctor directly. We spoke, and she confirmed that not only was David positive for one of the conflicting antibodies (I have two that are problematic, called “little c” and “big E”) but that the clinic didn’t even do the proper blood test on him to know the severity of the problem. The test didn’t show whether he was heterozygous (meaning he had one copy of the antibody and therefore a 50% chance of passing it to the baby) or homozygous (meaning he had two copies of the antibody and therefore a 100% chance of passing it to the baby). And the bloodwork from the egg’s genetics was completely wrong altogether so we didn’t know anything about the antibodies on that side.

Very long story as short as I can possibly make it: the clinic finally ordered new/correct blood tests, and as it turns out, both the egg and the sperm contain the little c antibody in its homozygous form (read: 100% this fetus has that antibody), and the egg contains the big E antibody in its heterozygous form.

It’s all fun and games until you get pregnant with an embryo that was never supposed to be put inside of you in the first place.

It’s all fun and games until your pregnancy is considered “very high risk” and you now know what a maternal-fetal-medicine specialist is.

So here’s how this will proceed:

To start, I’ll continue seeing my regular OB (who I just love, which – especially right now – I do not take for granted). We’ll monitor my blood levels every four weeks to see if the antibody level in my blood rises. It’s possible it may never rise, and I’ll still give birth to a healthy baby.

Or, the levels may rise. They may rise so much, that I’ll need to switch to weekly ultrasounds, starting at 22 weeks, at the hospital in Boston (read: 30 minutes from work/one hour from home). It’s possible the ultrasounds will continue to look fine, and I’ll still give birth to a healthy baby. Or, the ultrasounds may show increased blood flow to the baby’s brain, indicating something called hemolytic disease of the newborn – and that the baby could be developing anemia. If that’s the case, I’ll need to return to the hospital the next day so the baby can have an intrauterine blood transfusion, done under epidural. I’d go home either the same day, or would be monitored for 12 hours. And then I’d return to the hospital the following day or week to get checked out again.

Oh, and the effectiveness of these transfusions is only for 10 – 17 days so I’d likely keep going back every two weeks to do it all over again. Just keep on getting epidurals and giving the baby blood transfusions until it’s safer for the baby to be on the outside, being delivered prematurely at 33 – 34 weeks. It’s likely then that the baby would need one or more blood transfusions after delivery too. Hopefully it wouldn’t be in the NICU for more than a few weeks. Hopefully it wouldn’t sustain brain damage as a result.

Unfortunately, the doctor was not able to give any indication of the likelihood of all this happening, though he said that because we know the baby definitely has at least one of these antibodies, no one will be at all surprised if this trajectory kicks into play. It seems as though there is not a real risk to my health, thankfully, beyond the most likely thing which would be the need for an emergency C-section during one of these ultrasounds.

And the plan is that I’ll have an amniocentesis at 16 weeks so we’ll know whether or not we’re doing all this screening for the big E antibody too.

I’m scared.

I’m angry.

I am so very, very angry.

I’m scared of all this impact to my body and my life. I’m scared of trying to run an organization and mother three children while potentially needing to drop everything every two weeks with no notice, for multiple months. I’m scared of epidurals – I never got them while giving birth to my own kids because I was so scared of the thought of a huge needle going into my spine. I’m scared that I’m being selfish by worrying about all this when Vivianne and David are the ones whose baby this is happening to. I’m scared of the “I knew this whole thing was a bad idea” judginess that might be going through people’s minds. I’m scared that all of this is going to turn more people off to surrogacy than if I just kept my mouth shut about it all to begin with.

And I can’t begin to describe how angry I am that all of this was 100% preventable. I really think my whole perspective would be different had it just been some fluke thing that happened, that was a result of fate. I think I would have taken in the information, been sad, and rallied to make it all happen. Instead I just feel like the positive, joyful experience I’ve been working so hard on has been stolen away from me. I never had delusions that it would all be sunshine and butterflies, but this is just another category altogether.

In any event, there you have it. I’m taking some time to absorb it all and trying to take it one day at a time, whatever that means.

Hoping to send happier posts your way in the future.

 

 

 

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14 thoughts on “Breathing… Lots of Deep Breaths

  1. Dear Wonderful Carrie,
    I am in shock. I care about you so much! Yes, keep breathing. Can SO understand your fury!
    One saying comes to mind: Those who judge, don’t count. And those who count, don’t judge.

    Much love,
    Ruthie

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  2. So sorry your incredible deed feels punishing, but anything can happen, to anyone, any time. If only Murphy were a Jewish name? Your cheering support group and those of us who only know you vicariously remain just that. We all wish you success and smoothe growing of this little miracle for the family you chose, knowing they will love and provide for the baby, regardless of needs. Right now concentrate using your positive vibes and energy to combat the incompatibility challenge. You will have plenty of time later to know how you really feel about the fallibility of counting on others expertise and attention to detail. Best for success. Rooting for you from afar!

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  3. Oh Carrie, my heart is broken along with yours (and theirs, I assume).

    Just as there’s no i in uterus, you are not “i” alone. You have all the love, support, admiration this “us” can send in your direction. Keep breathing, we’ll all keep breathing and each day will unfold and you will deal with the situation that is presented to you. That’s what you are, that’s what you do, you make the best decisions you can, given the facts as you have them. As for the potential broken heartedness, let us all help you hold your fears and your negative stuff. I will keep you all in my prayers and we all will keep breathing with you.

    Hugs,

    Diane

    Liked by 1 person

  4. Dear Carrie, I too was horrified to read about the negligence of the clinic staff and understand how angry you must feel. Please know that I and all your relatives, friends and other acquaintances are (I am sure) praying that you do well and that you and ‘fetus’ are not harmed. With love and hugs, Zelda

    >

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  5. As someone who has four month old twins carried by a surrogate, I share your anger, and appreciate that you are on this journey regardless of the complications. I have been constantly in awe of the people who step up to share what they have with others who rely on them to create families. Hang in there and thank you on behalf of all of us Intended Parents.

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  6. I have been following your blog as a doula and birth lover – and have been admiring your courage, candidness and selflessness. I now send heaps of strength so that all the positives in your motivations may overcome the awfulness of this avoidable complication. May the pregnancy continue to be healthy for all and end in the best possible way for all.

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  7. Pingback: Moving Forward | there's no i in uterus

  8. Dear Carrie,

    I just stumbled upon this (via Facebook). I know we don’t really know each other (I know my daughter Rachel worked with you for, I think, two summers at Mayyim Hayyim, and I think you know Cathy from Prozdor), but I just wanted to offer a word of support, for what it’s worth. I can only try to imagine what you’re going through (though having cystic fibrosis in my family history, I understand the fear of uncertain genetic effects on pregnancy). And I so respect the magnitude of what you’re doing, even apart from this recent development. I only want to wish you strength, hope and support. I am certain you have the love and respect of many good-hearted people to help lift you up. For whatever it’s worth, I know that during challenging times, that can make all the difference. May you go from strength to strength.

    Chag kasher v’sameach.

    George

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    • Thank you so much for sharing. And the greatest respect to you !
      Please pardon my question: is it because you have a negative Rhesus factor and the IP’s have a positive Rh factor?
      If so, the clinic MUST have caught it!!!!!

      Like

      • It’s a similar concept to the Rh factor, but different (no shot for this one, e.g.). And there wasn’t even anything for them to catch, sadly, when I even told them about it in the first place.

        Thanks for your kind words.

        Like

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