Dear Ladies

Apologies for duplicating this here and in Miscarriage/Ectopic Support but I know everyone doesn't look at both boards and I want to reach as many people as possible.

I have just suffered my second miscarriage. I lost my first baby at 9 weeks and was delighted to get pregnant again straight away. Apart from a few small bleeds everything was going well and my scan at 21 weeks showed everything to be normal. Stupidly I felt so confident that I bought the pram. It all went horridly wrong and I delivered my son at 22+5, too soon for him to survive, and now I'm left angry and heartbroken.

I still don't know what caused my miscarriages and am awaiting the results of the post mortem and the blood tests

I want to raise awareness of an underdiagnosed condition called Hughes Syndrome. It is responsible for lots of miscarriages and the goods news is it can be diagnosed with a blood test and treated with a low dose of aspirin!

You would think that for the sake of a blood test and a course of aspirin every woman of childbearing age would be encouraged to be tested before they try for a baby or that this would be one of the standard pregnancy blood tests but it is not!!

I don't know whether I am sufferering from this as yet my blood test results are not back yet but I'm angry that I was not offered this test after my first miscarriage. I find this system where women need to suffer 3 miscarriages before they are entitled to investigations inhumane.

I strongly encourage everyone here who has suffered a miscarriage to demand that their doctor have them tested for this. My doctor knew nothing about this and i'm having to arrange this with the hospital but the website indicates that GPs should be able to arrange this for you:

Please see the Hughes Syndrome website for details. Prof. Hughes is based at St Thomas' Hospital in London. Print the details and take them to your doctor as in my experience they've not been made aware of this:

http://www.hughes-syndrome.org/diagnosis.htm

I intend to keep bumping this message up on the forum to spread the word to anyone who joins us here. I do not want to see people coming back here following a 2nd or 3rd miscarriage if it is preventable.

Sorry for the rant but I hope you will support me in this. Miscarriage is a horrible thing and I feel that following the death of my own son I need to try and prevent other women and babies suffering.

Thanks,

Claire xx

Hi Claire

I am so sorry to hear about your loss.

I agree that it is very frustrating once suffering a MC to not get any answers. I realise that sometimes it is just one of those things and cannot be explained but after my MC I found out that I may have something else to do with blood clotting - factor 5 leiden which can also lead to recurrent MC. As this can affect up to 5% of the population (it is genetic) I can't believe that I did not know about it! Am now in the process of getting tested but again it can be helped by low dose aspirin and I can't help wondering what if I had done this during my pregnancy. I don't even know if I have it yet and hopefully neither of us have these things!

Good luck in the future and let us know how you get on.

D xx

Have you seen this feature about Hughes Syndrome here on babyexpert too? http://www.babyexpert.com/Pregnancy/Could-Hughes-Syndrome-be-the-reason-for-your-miscarriages^/v1

Hi Clare! I'm so very sorry for your loss! I had my little boy on 5th june at 20 weeks! It broke my heart and I too am waiting for the results of all the tests they have done! I see the consultant on the 15th so maybe that can give me some answers! If I can't be tested for the two conditions mentioned above wold it be worth me taking asprin anyway when I try to conceive and in early stages of pregnancy? Clare if you need to talk you know where I am hun! Becky xxx

DebbieC, thanks for your reply. I had heard of Factor 5 leiden on a US message board but wasn't sure if they call it something else in the UK. It is hard waiting for the results to come back isn't it? It's amazing that just a 75mg Aspirin every day that cost 99p for 100 could make all the difference.

Becky Lou, I am so sorry to hear of your loss and I don't think the term 'late miscarriage' really represents the loss of our babies at this stage. Like you I feel brokenhearted and I will miss my son every day for the rest of my life. I am glad you have an appointment with the Consultant and hope that he/she is helpful and kind. I'm sure you will have no problem getting tested for Hughes Syndrome and you might find that you have already been tested if they have taken lots of blood for testing. Take the info from the Hughes syndrome website with you to your consultant's appointment so they can check if you've already been tested and don't be fobbed off as it is a simple test they should do without argument. The midwife I saw last week said the Consultants can send you there and then for any additional blood tests if they decide at your appointment that something else is needed.

In the meantime I would not advise taking the aspirin without it being prescribed by a doctor as I'm not sure if it would affect the results of subsequent blood tests. I think once you have been diagnosed you start taking aspirin from the positive pregnancy test.

I know how you feel as not having the answers as to why this happened to me is making the grief worse. I know i did everything i could for my baby in terms of diet and lifestyle changes but I feel that my body let him, my husband and I down. I need to know whether there is something wrong with me and whether it can be put right. I can't start trying for another baby until I have the answers as I can't put myself or my husband through this again until we have seen our Consultant and gone through the blood results.

Good luck to you both. I'll be checking this board regularly so do message me if i can help in any way.

Hi Claire,

So sorry for your losses. I hope that your blood tests give you some answers. I am going to the docs next week so I will take the info along with me and speak to them about it.

Thank you for making me aware.

Kristen xx

Hi Claire im ever so sorry to hear of your losses especially the one at 22 weeks. It must have been heartbreaking and my thoughts go out to you and your family. I have heard of this condition and i was thinking of mentioning it to the doctor when i have my appointment but after your thread i will most certainly be asking for this test. Thank you so much for posting a lovely, thoughtful post and all the best to you and your partner!

MrsTIL
xxxxx

Dear Mrs TIL

Thank you for replying to my post. I do feel blessed that I have such a lovely husband to support me as I realise that some men do not know how to support their wives in times like this. We find we are pretty inseparable at the moment as we try not to cry alone.

I hope your doctor is supportive. I don't know why they know so little about miscarriage as you would think as they come across it so much in their career they'd make it their business to know more. It's a shame that they just focus on the fact that 1 in 3 pregnancies ends in miscarriage. I was shocked when I got my 1st BFP and went to the docs only to be told to go away and come back in a few weeks 'as so many pregnancies end in miscarriage'. Unfortunately her prophesy came true. In the meantime I switched to a nicer GP!

Hi Claire

Really sad to hear your story, the fist time I heard of the syndrome was on this site when I was looking for answers as to why I had my first mc, and sadly just recovering from my 2nd, I appreciate that mc is common but that doesnt make it any easier to deal with far from it, it just becomes more frustrating when the docs say they wont take you seriously until you have had 3, so making you go through more emotional turmoil when like you say there could be a really simple solution. In fact the more I think about it the more sad it makes me! really hope you get some answers soon, my thoughts are with you

Luc xxx

Hi littleminx,

I'm sorry to hear you've been through such sadness too. It really does not feel enough for people to say you were just unlucky or that 'things will be fine next time'.

I hope that your doctor is running tests or referring you to a miscarriage clinic for further investigations. My GP said he'd refer me but wants me to see my consultant first which is fine.

I don't know the costs involved but I'm sure blood tests must be cheaper than an EPRC and scans that follow after a miscarriage.

Good luck. I hope you have good news to report soon!