3rd MMC last week. Advice please on what to do now...St. Mary's, Lister etc

[MsJL]

Hello there. I'm so sad to be back on here....

On Friday we had our 8 week scan (following 2 previous MMC). My hgc levels had previously been good (at 5 wks) and we had a heartbeat at 6 weeks so I was trying desperately to be positive but once again we discovered that just after 6 weeks our baby stopped developing.

I am 36, have no children and am devastated. We are under the care of a specialist in East Kent and the EPU nurse has said she will refer us to Prof. Regan. I don't want to be impatient but am wondering how long this is likely to take and if this is the best thing for us. We have had blood tests for chromosome abnormalities and I have been tested for blood clotting and lupus and all is well so far.

I don't want to obsess about killer cells but as I have lost three babies at between 6 and 7 weeks it must be a possibility.

I am wondering what people's experience of St.Marys and the Lister is and whether we should pay to go private. We're due to get married in two months and I'm worried that when I have that lovely distraction taken away that I will hit a real low. I would really like any support people feel they can offer.

Hey there Mrs JL.

I'm so sorry to ready your news.

WRT Lesley Regan, from what I have read on here the clinic wont entertain the thought of NK cells so might be worth a referral to somewhere that does. I know the Liverpool Womans hospital does.

Again cant advise on waiting times for regans clincin but I know the whole testing takes arouns 3 months from start to finish. I had tests about 4 years ago and after just having my 7th mc (2nd since DS2 was born 3 years ago) they now want me to have more testing.

Congratulations on your wedding too btw! Are you going on honeymoon. I can understand where you are coming from dreading the low afterwards. I got married in July 2009 and there was a low few weeks after because there was so much hype leading up to it.

Look after yourself as much as you can.

LunaticFringe and Julezboo,

Thank you for your thoughts and support.

I think I might buy the book. I was wondering whether I would find it helpful but I suppose if were going to be under her care it's useful to know more about her work.

I know that not everyone agrees with the 'killer cell' theory and as DH2b is a scientist he is researching away for me.

Thank you for the thoughts on our wedding - it's good to have a positive thing to look to.

LunaticFringe - good luck for tomorrow. Hope things move forwards in a positive way for you. x

Hi MsJL. I am so sorry to hear of your loss. After my second miscarriage I underwent the antiphospholipid tests. The results were in the normal range. After my third pregnancy which ended in the loss of my son at 26 weeks, I was referred to Professor Regan. She redid the tests and, although I was in the normal range, I was close to the abnormal end of things. She takes a conservative approach to treatment and advised me to take aspirin and heparin for the duration of future pregnancies even though my bloods were technically normal. I went on to have two further miscarriages (abnormal development) before giving birth to a healthy DS in 2002. After a further 2 miscarriages, I gave birth to a healthy DD in 2004. So, what I am trying to say (in a very round about way!) is that although your tests may have come back "normal", you may still benefit from treatment. Fingers crossed for you - I hope you find some answers.

Thank you mussyhillmum.

Are antiphospholipid tests to do with clotting? Some of my results were apparently in the lower end of the range but I was advised that aspirin would 'make no difference' to me by my specialist at East Kent. I am of course relieved to be seeing Prof Regan so we'll see.

I am having a spectacularly bad day today so all words of encouragement are much appreciated.

Hi MsJL,

Sorry to take so long to get back to you. Yes, antiphospholipids are related to clotting. Antiphospholipid antibody syndrome is often referred to as "sticky blood". I am so pleased for you that you are going to see Professor Regan. I know that some people think her bedside manner is lacking, but I can't think of anyone I would trust more. She delivered both my children, though, so I am particularly biased! Good luck and do let us know how you get on.

hi mussy just a word about St Mary's....there are six consultants based there and it seems to be fairly pot luck who you see on the day. patients are officially referred to Regan's clinic but don't be surprised if you don't see her personally. I hope for your sake you get to see her or Raj Rai. It took more than three months for my appointment there to come through on the NHS. It is almost as hard getting a private appointment.
The person to see at the lister about NK Cells (and all the other 'conventional' miscarriage tests- there will probably be a lot you haven't had if you've just been with the NHS so far) is Yau Thum. I believe Mr Shehata at the Epsom, who is an expert in the NK cell theory, may not test for such a wide range of other conditions linked to miscarriage.

Hiya,

I was seen at St Mary's privately and the waiting time (not for Prof Regan) was short (only a few weeks). The secretary there is called Mary Stanton and she has a list of prices for appointments and the different kind of tests that she emailed me before we decided.

In total, we have spent about £1500 on tests and appointments (we were lucky not to need the karyotyping tests, which are the most expensive, as had already had these done on the NHS: invasive tests like hysteroscopy / lap are also more expensive).

It should be possible to be referred on the NHS (by your GP) to both St Mary's and Dr Quenby (now at Birmingham Heartlands, the clinical trial is moving with her from Liverpool Women's Hospital) simultaneously, as the tests they will do at each place are different. As others have said, at St Mary's they do not believe the science behind the "NKC" theory.

At St Mary's they do a special kind of blood clotting test called a thromboelastogram (TEG) that is not done elsewhere. They are also thorough and ask you to fill in an extensive questionnaire before your first appointment. I found the whole investigations much more systematic than at my local hospital.

In my case, a potential problem was identified with an ultrasound scan and HSG test at St Mary's that my local hospital had missed, and we have been able to try some treatment (the specialist at my local hospital was of the "just try again", "you don't need that test" mentality). I am really glad we went there, whatever happens with my current pregnancy (nearly 12 weeks).

Mr Shehata does more general NKC blood tests, it is not the same thing as Dr Quenby's clinical trial. Have personally decided not to go down that route.

Hey MsJL

I'm so sorry to hear this, and i share your hurt. 3 weeks ago I lost my 3rd child at 7 weeks. We went for the 1st scan at 6 weeks due to spotting, but after a week the bleeding progressed to almost a period. We went for another scan to find out that I had lost the baby. This is my 1st miscarriage with my fiance, the other two i had with a previous partner. Tho i do have to admit only 2 have been natural!

I too have been referred to numerous doctors, which being only 23 is enough to make you worried about the prospect of ever carrying a child full term. I really share your pain. I wish i'd have found this site a few weeks ago, I feel so a lone in this and i'm struggling to get myself back to being myself.

Congrats on the wedding hope all goes well!

Thanks again to all of you.

Dozer, I hope 6 days on you're ok and well. I've only just read your reply (on 2nd March) which I've found massively helpful. I so wish you all the best and can only hope that a positive outcome might be possible for me one day.

Dreamfastfelfling - I hope you're feeling a bit brighter today.