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When The Worst Happens: High-Risk Pregnancies & Medical Terminations

Sep18

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Dear Amy,
I love reading your writing, but I’m not sure if I should write this to you? I never really saw myself writing you, just being that person who sits in her office and laughs at your jokes and tears up when things are going bad for you. But now-things are going bad for me, really bad and I honestly just want a different spin on things–God, I ramble-okay, I’m pregnant, about 7 weeks or so pregnant and it wasn’t planned at all. My husband and I have been married about a year and I think this would be okay except I have a rare blood clotting disorder.
The doctors say I *could*, possibly keep the baby, but the baby may have serious problems from a lack of sufficient blood flow, and there is also a possibility I could have a stroke at anytime during the pregnancy. But they say, it’s also possible I could be fine and the baby could be fine, it would just be a very high risk pregnancy – I’d just be on strong blood thinners through out the entire thing and in and out of the hospital a lot. I have other doctors who are pushing a surgical abortion, soon! Now! And warning me constantly how dangerous this is. My husband is on the fence, he wants me to be healthy, and his attitude is we can adopt, I just want you to be okay, and you know? I always felt that way too, but then I was sitting in the doctor’s office listening to my baby’s heart beat and all of the sudden, maybe dying, it didn’t seem like such a risk. All of the sudden in my very very pro-choice mind, it seemed there was no choice at all, because that heart was beating to me, for me.
I’m afraid, I have to make this choice soonish, and my friends and family all just want me to be healthy, but they don’t know! They do not understand! I’m so torn, I obviously do not want to die or maybe have a stroke, or have a child who has serious health complications because I was selfish and couldn’t make a hard choice, but…but…… This is my baby we’re talking about, not just a cough I need to take some medicine for. I should wrap this up, I’m stealing all my officemates tissue, glad she’s out today. Alright this is really long, and I’m sorry, I guess there isn’t really an answer you can give me, I just wanted to hear your thoughts.
Scared, and confused,
RB

Oh. Sweetie. Honey.
I’m so sorry. I’m just…so sorry. What a terrible, awful situation to be faced with.
You guessed correctly, of course, that there’s no answer I can give you. I couldn’t even tell you what I would do, if our situations were reversed, because I have no idea.
Being pregnant has always only strengthened my belief that yes, I am pro-choice. I am pro all possible choices. Pregnancy and childbirth are not small things. They are not something we should simply all “suck up and deal with” because a condom broke or miscalculated our cycle length. They are far too important to think of them in terms of “consequence” or “kittens rainbows baby dust meant to be squeeeee!!!” They require an enormous amount of self-sacrifice and putting yourself second, and since none of us can really predict the future, we must accept that pregnancy always carries risks and dangers for both us and our babies. I believe that women should not be forced or guilted into accepting those risks 100% of the time. I believe that the value of our own lives — our worth as human beings and citizens — is not diminished because we are pregnant. That our safety, health and well-being simply must trump the needs of a gestating embryo sometimes, and that only we have the right to make that call, that choice.
But being pregnant also means…oh, sweetie, I UNDERSTAND. I understand what seeing that flickering little pixel on the ultrasound screen can do to you. That the love and desire and instinct to protect suddenly trumps everything you know and believe about science and blastocysts and when life begins because LOOK AT MY BABY! I could never call my baby an embryo or a fetus or anything other than…baby. Child. Son.
I would die for my children. I would also do anything to spare them pain and suffering. In your case, these two noble instincts are at odds with each other, and…I’m sorry.
I punted the last question about medical terminations — the question I’m assuming prompted you to write in the first place — to the wonderful Cecily, someone who had been there, done that. I haven’t. In fact, I am biting a throw pillow right now as I type and hissing thanks to God that I’ve never been there. Again, I have no idea what I would do. But I know that whatever choice you do ultimately make — I could see myself making and I could understand exactly why you chose that path.
And while this isn’t a total punt, I did want to share an email I received with the class, since it contains some information that might help.
Hi Amy,
I just posted a lengthy comment in response to today’s Smackdown question from the person who has a friend faced with possibly terminating her pregnancy. First, I wanted to thank you for publishing the question at all despite the obvious hot-potato-ness of it. As someone who has been through the experience of terminating a much-wanted pregnancy, I know how isolating the whole experience is, mainly due to the societal taboos surrounding the subject. It’s important that these stories be brought to people’s attention.
The real reason I wanted to write, though, was to pass along a link to the support group my husband and I joined right after we ended our pregnancy last year. www.aheartbreakingchoice.com is the main website–there is lots of information there on finding in-person support groups as well as other parents’ stories (which I highly recommend you NOT read in your current pregnant state), and I believe also links to other resources for parents who are making the decision. Then there is a private discussion forum at http://aheartbreakingchoice.yuku.com/directory.
The forum is full of literally hundreds of women and a few men who have ALL terminated a pregnancy for medical reasons. It was a lifesaver for my husband and me.
Thanks again,
A


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About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


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22 Responses to “When The Worst Happens: High-Risk Pregnancies & Medical Terminations”

  1. Suzy Q Sep 18 at 1:00 pm Reply Reply

    Big hugs and warm thoughts of support to RB and her husband. I don’t have any insight or advice to offer, having had no experience with this.

  2. Jess Sep 18 at 1:38 pm Reply Reply

    I cannot even imagine. I don’t really have much to say here, but wanted to share my support. I agree though, there is no right or wrong choice here. Only A choice and that choice only has to be right for you.

  3. JennyW Sep 18 at 2:01 pm Reply Reply

    Amy,
    No amount of liberal pro-choice propaganda smear campaigning from other friends, writers, politicians, etc. has ever affected my conservative beliefs in the way that your writing today has. Like Jess said, there is no right or wrong choice in a situation like this. I never would have admitted that before today. So thank you for being honest and kind and writing from your heart.
    And to RB, best wishes and prayers.

  4. Noelle Sep 18 at 2:07 pm Reply Reply

    RB: Get a second opinion from a high-risk OB/GYN (aka perinatologist, or maternal-fetal medicine doctor). They will have the most insight into your risks, the treatments required and the risks to your child. I would recommend going to a major academic medical center if you can. Good luck.

  5. The Mysterious A Sep 18 at 2:15 pm Reply Reply

    I am so sorry for the situation you’re in. It is a horrible place to be. The only thing I can say is do some research and get second opinions. Are there online or in-person support groups for people with your particular condition? Is there an OB or other specialist who has seen women with your condition before? You need to talk to them, even though I realize it’s the last thing you want to do right now. Because what we found when we were confronted with a poor prenatal diagnosis (in our case, the baby’s, not mine) was that at a certain point in all our research and second-opinion-seeking, the decision became clear. It wasn’t EASY, not at all, but it was obvious what we should do. And the previous poster is right: there is no right and no wrong here.
    It seems so inadequate to say “good luck,” but I hope things go OK for you no matter what road you choose.

  6. hydrogeek Sep 18 at 3:10 pm Reply Reply

    I can only second what Noelle said. Get to a high risk OB or an MFM specialist NOW. Today. Call them and cry on the phone to get an appointment. Like the Mysterious A said, talking to someone(s) who is(are) qualified to deal with this is the only way to get enough information to make this decision. And I am so sorry you are having to make this decision. You are in this stranger’s prayers.

  7. autumnalyssa Sep 18 at 3:16 pm Reply Reply

    I don’t know if this is the same thing, but I have a protein S deficiency, which is a blood clotting disorder, and I just finished up a pregnancy during which I was on daily injections of lovenox, which is a blood thinner. Our pregnancy was unplanned, too, but we went ahead with it. Everything went totally fine, and my baby girl is almost five months old, totally healthy. You’re situation may be more extreme than mine was, but I would strongly urge you to talk to a hemotologist before making your final decision. I really hope everything turns out the best possible way for you guys!

  8. Frema Sep 18 at 3:27 pm Reply Reply

    I feel so bad for RB. I am 19 weeks pregnant with my second child and couldn’t imagine having to make a choice like that.
    One thing I did want to comment on is this:
    “I obviously do not want to die or maybe have a stroke, or have a child who has serious health complications because I was selfish and couldn’t make a hard choice”
    I don’t believe that giving birth to a child knowing he/she might have serious health complications is selfish. Just the opposite–it’s very brave.
    Best of luck to you, RB.

  9. Olivia Sep 18 at 3:55 pm Reply Reply

    Best wishes, RB, that you will find peace in the choice you make.
    Amy, this is one of the best piecs I’ve seen written on the importance of choice. Without it, so many women and their loved ones would suffer.

  10. thatgirlkelly Sep 18 at 4:55 pm Reply Reply

    Yup, yup, on board with the searching for an OB with experience in your condition. With the right doctor, you could see this thing through and again with that right doctor, if things aren’t going your way, the advice will have greater resonance.
    I send you luck, positive vibes and blessing from the deity of your choice.

  11. Jessica Sep 18 at 5:23 pm Reply Reply

    I just discovered this blog a few months ago but I read it several times a week. This is the first time I have posted, but I just felt I had to. I am 23 weeks pregnant. This is my third pregnancy in a year, I lost the first two to first trimester miscarriages. After the second second miscarriage I was diagnosed with two blood clotting disorders, MTHFR and PAI1. In addition to prenatal vitamins, Synthroid for hypothyroidism and extra folic acid (MTHFR also hinders folic acid absorbtion) I am taking 81mg of aspirin daily and doing daily injections of the blood thinner Lovenox. Not exactly how I imagined my pregnancy to go, but so far it is working. My OB kept a close eye on me in the first trimester and will start that again at 32-34 weeks when I go off of the Lovenox. Yes, I have more risk, but the blood thinners have lowered it considerably. I would strongly recommend a second opinion from a high risk OB or a Maternal Fetal Specialist. Also, not to recommend another web community, but ivillage has wonderful message boards with women who have had many different problems with pregnancy. The Trying to Conceive After Miscarriage board is full of information about blood clotting disorders.
    It is terrible to be faced with the knowledge that your body is not capable of keeping a child alive on its own. Whatver choice RB makes, it will be the right one.

  12. girlintheworld Sep 19 at 2:50 pm Reply Reply

    RB-
    I know that this choice must be very difficult for you and there are so many different things pulling you in two very opposite directions but I just want you to know that I’ll be praying for you and the decision that you and your husband have before you. I also want to say that it sort of seems to me like you’ve already made your choice:
    “All of the sudden in my very very pro-choice mind, it seemed there was no choice at all, because that heart was beating to me, for me.”
    I’ve never been in your situation and I don’t know what I’d do if I were but I do know this: If there was ever anything in this world that I would risk my life for, it is my son.

  13. Emily Sep 19 at 4:27 pm Reply Reply

    Thank God you have a choice. Amen that you have a choice. It’s a hard, heartbreaking choice, but let’s all be thankful that you have one.

  14. Alaia Sep 19 at 5:34 pm Reply Reply

    Women faced with this choice should RUN, not walk, to a maternal-fetal medicine specialist – PLEASE. Depending on what part of the country you live in, there is probably a fetal therapy center not too far from you – Philadelphia has one, New York has one, Chicago has one, as do many other cities. At the very least, consult with at least two maternal-fetal medicine specialists (aka perinatologists aka high-risk obstetricians). I had a pregnancy complicated by a very rare fetal anomaly (limb-body-wall malformation), and chose to end the pregnancy – but only after I was sure that I had gotten the best medical advice I could, part of which included one doctor saying to me, “This is not a choice you need to make today or even tomorrow, and this is going to be one of the hardest decisions you will ever make – here is the name and number of someone who specializes in fetal diagnosis who you should see before you make this decision.” NEVER trust a doctor who tells you that you HAVE to do something like end a pregnancy immediately, or gets defensive about the diagnosis (unless there is truly some critical issue that is threatening your health). I would also recommend the book “Precious Lives, Painful Choices” that helps families look at both sides of the coin (continuing versus ending a pregnancy) and the implications of the decisions. Good luck.

  15. Oh Sep 19 at 6:19 pm Reply Reply

    I found out about my clotting disorder while I was pregnant. I was only able to spend half of my pregnancy on blood thinners. My son was born a little early, but healthy.
    My advice would be to find a high risk OB and a good hematologist. It is possible to have a healthy baby with a clotting disorder. Best of luck in your decision.

  16. silvia Sep 20 at 12:20 am Reply Reply

    My advice is keep your baby. I had the same disease, but I kept my baby and she’s born as a very healthy and happy kid. I saw a hematoloist every two weeks throuhout the prenancy and ot my blood checked also. The medicine is depend on how your blood clot is.

  17. Madam Pince Sep 21 at 7:39 pm Reply Reply

    No advice, just good thoughts as you face this difficult and horrible decision.

  18. Em Sep 23 at 9:38 pm Reply Reply

    First of all, my good thoughts are with you and your husband at this difficult time in your lives.
    Second, I have a friend that was recently pregnant (had her healthy baby in August) and she also has a blood clotting disorder. I’m not sure of the rarity or severity, but I know that she took some major precautions during the pregnancy (such as injecting herself with medications every day). I know that she and her husband were fairly anxious and nervous throughout the whole pregnancy. I’m sure you’ve talked about all of this with your doctors, etc., but just wanted to share a fairly similar story with you like the other comments made so far. I would speak with as many health professionals as possible before you make this huge decision. It’s best to get the opinions of a lot of people. And then listen to your heart and your gut. Namaste and peace to you.

  19. Peanut Butter Sep 24 at 2:47 am Reply Reply

    I knew some people who used to use kool-aid and it worked. It got all over everything too but it’s cheaper. I think if you mixed it in some lotion really well then let it sit in your hair for a that it would work. A pack of kool aid’s only a few cents anyways so if I was going to make funky hair and get dye everywhere I would want to use the extra money for some oxi-clean.

  20. suzannemarya Sep 24 at 5:56 pm Reply Reply

    Like some of the previous commenters, I also was on twice-daily injections of Lovenox for the duration of my pregnancy to treat my own rare blood clotting disorder (antiphosholipid antibody syndrome). I’m not sure if you’re in the DC area but if you are, I want to highly recommend the Greater Washington Maternal Fetal Medicine practice (and especially Dr. Pinckert, who is amazing and empathetic and will be very honest and warm with you): http://www.gwmfm.com/ourPhysicians/. If the maternal fetal specialist that you see does think that you will be fine with Lovenox or Heparin or another blood thinner, I can tell you that the injections are not all that complicated and they become just a part of your daily routine like anything else. Definitely well worth it for me – and my little two-month old cutie that’s asleep on my tummy right now. Whatever choice you make, I wish you everything wonderful.

  21. Loralee Oct 02 at 12:04 pm Reply Reply

    Twenty bucks says that I have the same disorder as the commenter. (Hey,Amy! I’m pregnant! Now YOU can totally snot a booger on MY maternity dress as payback if you want! Heh. You’ll probably meet the little one at BlogHer. Woot.)
    So here I am, 5 minutes pregnant and Googling (for the millionth time over the years) for more information and was ticked to see this as result number two.
    And now for RB:
    I completely empathize. I have a clotting disorder
    I’ve thrown a massive one during my second pregnancy that almost killed me and that I still suffer effects from. I have also lost a child and there is nothing worse.
    I am sure you are being torn in pieces.
    Clotting is scary. SO scary. It is like you are living with a time bomb and it is such a nightmare and so risky. I know that there is a lot of pressure from a lot of people but it is how YOU feel that matters.
    Get an OB with experience in your disorder, talk to your husband, pray if it helps and listen to your heart. Also? I would really see if there is a support group in your area or online because honey, you need to feel some love and strength right now.
    I know that this comment is really late, but I really hope you see it, RB. Feel free to drop me a line any time if you need to talk to someone who “Gets it”.

  22. Shay Will Sep 11 at 1:11 pm Reply Reply

    I had many questions about my childs potential risks of any sort of harm to my baby. I called this number to the mothertobaby teratogen information service and they really helped me get through my situation they provided with alot of relief and comfort. Here’s the number if any of you are interested. 800-733-4727. Their are real genetic counselors that can talk to you one-on-one thats the best part about the service.

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