Help needed for multiple m/c in darkest Wales

[remainingpositive]

My husband and I have suffered some awful tragedies, we had our 1st m/c at 11wks in Jan12, then another at 5wks in Apr 12. We then got pregnant again, but our little son was born extremely prem at 25 weeks, he lived for 5 weeks but died due to bad care in hospital. No explaination was given for his early birth except maybe infection. We then lost another little boy at 19wks in May 14 and cervical insuff was mentioned but again no real cause given. Eventually then tested me and I am positive for thrombophilia factor V leiden. We got pregnant again but lost twins at 11 wks Jan 15. I had received no anticoagulants prior to their loss despite going to my consultant from 5 weeks gestation. Because we live in a remote area of SW Wales we have no maturnity unit to our hospital now and only have one Gyne consultant, that my GPs tell me I have no choice but to see. I have lost all faith in this system and need HELP PLEASE. I need to know if anyone has been where I have been.Where did you go? Who did you see?
If I have to travel to London or Scotland for that matter and see a private consultant, then so be it. Is this the best way, as hopefully there will lots of follow up appointments as we make our way through a successful pregnancy to term.
Thank you to anyone who has any help for us. And we would like to say all our best wishes to the mums reading and love to their babies both here on earth and the ones that got their wings early. xxx

Goodness, my heart goes out to you both. I couldn't read and run, and have no advice on your specific situation, I'm sure someone will be along soon with some wise words.

In the meantime, and if money allows, I'd certainly be looking at a private consultant.

Best of luck to you both.

Thank you juggling for your kind words. I thought that there might have been some more advise. Guess we really are the only ones in this boat. xxx

I'm so so sorry for your losses.

Do you have patient choice? If so, I think you may qualify to be seen at St Marys RMC at Paddington on the NHS. Yes you need to pay all your travel (and it does add up - i travel from the wildest north west) I take comfort from the experience of the consultants.

I'm afraid I don't fully understand whether patient choice applies in Wales but if it does and you're willing to travel to London, then I'd certainly consider it.

So sorry for your tragic losses.
Seeing a specialist about the fact you can conceive but not remain pregnant sounds like a priority and if you cannot get an NHS referral to a London clinic or any other English clinic then agree seeing someone privately is the way to go.

I am sure some wiser people than me will post but names/clinics I have heard of are Dr Quenby ( Coventry?), St Mary's London. My history was infertility and then failure to maintain a pregnancy ( one 31 week stillbirth recently, one live child in 10yrs) so we have had treatment under the Care chain of clinics, also Zita West ( London), and also considered ARGC and The Lister in London. May be worth looking at their websites for tests they offer - the reproductive immune issues on ZW's website is worth a read. However for people who conceive but cannot carry they may not be worth looking at.

So sorry to hear your story.

Ps Should have said we have Factor V Leiden, 2 other thrombophilias, raised NK cells, too high thyroid level ( needs to be under 2.5 I was told for pregnancy), Th1:Th2 cytkoteine levels ( not sure of spelling!!) are out, raised other levels ( 19 and 56 from memory) which causes implantation/higher miscarriage risk but no known issue for early birth or cervix issue ( did they scan your cervix or suggest a stitch for future pregnancy?) but our main issues have always been lack of sperm, my aged eggs ( late 30's and now sadly into 40's) and lack of conception.

So knowing what the issues are so you get a treatment plan sounds like a priority. Then hopefully that will work and your next Bfp will have a positive outcome.

St Mary's see NHS patients from outside their area via tertiary referral I.e. You have to be referred by a gynae consultant, not your GP. You can also see them privately. The other thing I'd suggest is (maybe via PALS if you have that in Wales) asking to go through your notes with a senior doctor at the hospital where you have been treated to answer your questions about the care of your premmie son and why the anticoagulant treatment was not prescribed in your most recent pregnancy.
I was diagnosed by Prof Quenby at Coventry (implantation clinic) and then treated on her recommendations by my local recurrent miscarriage clinic, so you may not have to travel repeatedly.
You are very welcome to come and join the recurrent miscarriage thread for some support if that would help. I had 4 miscarriages and it gets to a point where you feel like the only one who has ever been through it so often. There are a few people on the thread who have suffered late losses, and a lot of collective wisdom about causes of/ treatment for recurrent loss.
I hope you can find a way forward after so much sorrow

Contact both the Miscarriage Association and Infertility Network UK for advice. They're knowledgable on what's available in different areas
and referral ties options etc.

I have no advice to offer but reading your post made me so sad, I am so sorry for your losses. We lost our DD at just over 15 weeks last year and going through that once was hard enough. Life is so unfair at times. Thankfully we went on to have our DS who is now 10 weeks old and such a blessing. You sound like such a strong and amazing lady and I really hope everything works out for you x

I'm so sorry for your losses. If you were considering some private treatment have you looked at CRGW which is just north of Cardiff? I had an IVF cycle there which sadly ended in miscarriage but their care was impeccable. I don't know whether their services would offer what you need but might be worth considering. I saw Amanda - she was lovely. Wishing you lots of luck. X