Pre eclampsia and aps

Hi there I am new here, I lost my son last february from pre eclampsia at 27w. Unfortunately they did multiple blood tests and I am positive for anti cardiolipins Igg at 68, seems to be middle positive. I am not positive for other antibodies, or lupus or other auto immune problems and I have no other health issues. But I am verh worried I read that a lot of miscarriage and stillbirth can occur and it was my first pregnancy. I am so anxious :( please is someone can help ? I have an appointement with an hematologist but in end of july. I really feel so sad and now so worried.

Thank you,

Sarah (from Belgium)

12 Replies

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  • Hi and welcome, Im so sorry for your loss.

    I lost my 1st baby at 38 weeks, and without diagnoses still went on to have 2 children. As you have been diagnosed your future pregnancies, with medical help will be more positive. The key is the right anticoagulation. Give yourself time to grieve though.

    Im sure others will come forward with their experiences and help you through now and in the future.

    Not sure 'the system' in Belgium, good you are seeing a hematologist, do you know if they are an APS specialist? That would be a great help to you.

    Stay in touch, we all help each other on here. X

  • Thank you so much for your answer. Now I am grieving and need time to heal you are right.

    I saw an hematologist and they are very well aware of APS. They told me that if the results are positive I will be on clexane injections and baby aspirin but here it is very difficult to have an appointement soon with a specialist, I cannot meet my doctor until august and these results are so frightening ! They tested me for a lot of anti dna and other things everything is ok but these anti cardiolipin are scary.

    By the way english is not my mothertongue so maybe I am not always very clear.

    Thank you for your support

    Sarah

  • Your English is very good no worries. I appreciate that July & August dates seem so long away, having aps is horrible and very daunting but usually once we are diagnosed we are helped to deal with it.

    After I lost my son, I was told not to conceive for at least a year, because I had had a Cesarean - this felt like a lifetime. I presume they have given you a time for your body to heal as well?

    In your case, pregnancy is your first issue, seeing your doctors in July, will give you so much more information, regarding coagulation before and during your next pregnancy. Which will reassure you. I was well monitored during my 2nd pregnancy despite not being diagnosed - still doesn't take the worry and panic away but hopefully your family on here will help you.

    Also talk to your partner regarding all this, it helps if they understand too.

    Easier said than done but try not to worry, the stress is not good.

    xx

  • Thanks, I was told to wait 6 months so I will be able to try again in august. 6 months are already a lifetime so I cannot imagine a year. It must have been very difficult for you to wait.

    I am wondering if I need to be on baby aspirin before I am pregnant or if I have to take it when the test is positive. In belgium they say that I must take baby aspirin when pregnant but is it the right timing... I don't know.

    I hope and want that baby so much.. I even don't ask for a big family, at least one :( I will turn 30 in july and I am craving for it.. the good point is that I have apparently no problem on getting pregnant as it worked the first time we tried... but I didn't imagine life would be so painful this year.

  • Hi, I notice a teaching hospital in Belgium was part of this study, you may need to make contact as having the correct specialist to help you with any further pregnancies is crucial.

    So sorry you have had a difficult time, and lost a baby. I enclose a paper here, if you click on the name 'Kristin Jochmans, 3rd line down on left, it might be worth contacting the to see what they advise: trialsjournal.biomedcentral...

    Feel free to use our forum for support, we have people from all over the world on here, and soon an international/global charity for extra information, website nearly finished.

    MaryF

  • Thank you Mary, this doctor is very close from my home so it's perfect. To be honest I made appointements with 3 different hematologists to see what they advice. I really hope to be a mum one day but I know I need a proper treatment.

  • Dear Sarah, I'm very sorry for your loss. You've already had some great feedback above. I had HELLP syndrome during my pregnancy (and probably also pre-eclampsia, they forgot to test my urine at the time) and I didn't know I had APS until after my pregnancy. There are treatment options if you want to start trying again - hang in there while you wait for your appointments. Take this time to educate yourself about APS (in my case educating myself reduced my worries). Do you speak Dutch or French? I'm from the Netherlands and speak Dutch - you can always PM me if you would like to write in Dutch. If you speak Dutch - this is also a good website on APS to check out in case you haven't already: antifosfolipidensyndroom.nl/ Good luck. X

  • Thank you for your reply ! I speak french as I was born in France. I try to read about APS but it makes me worry more, probably because I am very fragile at this moment. I hope to have some answers soon.. My main question is do I have to take baby aspirin before trying to get pregnant as in belgium they don't start it before a positive test and I don't want to miss something.

  • Hi Sarah, I have not tried again after my first pregnancy. So I cannot tell you what they would have done treatment wise. A very good question you have. Better wait a bit till you have the answers. Try to enjoy some other things in the meantime. What do you like to do? I like to take pictures in nature - it's very therapeutic for me. Also meditation helped me to get the edge off. There's plenty of time, don't worry. I was 36 when I was first pregnant. Remember: this too shall pass. X

  • You are right, I have time and need some rest both for my body and my heart. It is so hard and I am so stressed.I also like taking pictures in the nature and gardening. I hope to find some peace inside myself but this maternity craving is killing me.. and I miss my baby boy so much.

  • I'm so sorry Sarah. I have no idea what it is like to lose a child. I'm crying with you right now. There WILL be better times for you. I know there will.

  • Thank you for your words full of kindness.

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