Can I trust NHS to test properly after 2 stillbirths?

[desperatehousewife]

I'm feeling really angry today and feel slightly let down by the NHS the last 3 times I have given birth - i know there's no such thing as a perfect, trouble free birth (maybe there is??) but my 3 have all been nightmares. Luckily though the first one did at least result in a live baby who is now a fantastic 4 year old - and I do consider myself very lucky.

I have now had two IUDs in a row within 6 months(inter uterine deaths) and I cannot and will not believe that they are not linked in some way. The likelyhood is that the postmortem and tests will come back as inconclusive again (just as they did in November) and I'm not sure I am going to be willing to accept that this time round.

Is there any point at all in me going to see a private consultant (even though it's the NHS that have the baby the placenta and my amnio stuff)?

how on earth can I be on top of this to make sure that everything possible will be tested for? I am not medical and I have no idea if I am being taken seriously or not.

Any advice would be greatly appreciated.

[spinach]

There must be consultants who specialise in looking after women who have experience multiple IUDs... just as there are those who specialise in multiple miscarriages. I'm afraid i dont know of any though... how helpful has your gp been? any use asking to be referred to a specialist, its a reasonable request. So sorry you have been through this, I hope you are coping and i hope wednesday wasnt too horrific. xxxx

[tribpot]

Would \link{http://www.uk-sands.org/\SANDS} be able to help you at all? I'm so very sorry for your loss.

You may also be able to find some American sites on stillbirth which can give you an idea of what tests ought to be run - American patients are much more proactive in general I think, and more attuned to going to their doctors with a list of things they want considered.

[snorkle]

I don't know DHW. After my stillbirth they ran many many tests and all were negative. They told me that it is often the case that they couldn't identify a cause. That was 15 years ago now, so things might have moved on. I doubt that any old private consultant would be any better than the NHS ones. SANDs might know if there are any specialists in the field in the country - but I've never heard of them. If there are, I'd try to get referred to them on NHS for second opinion before going the private route.

[foxinsocks]

there are special clinics run for people who have repeated miscarriages so there must be consultants who specialise in that area - I remember noticing one at St Mary's (London). Perhaps if you ask your GP he will tell you where your nearest one is so you could get a private referral.

Sorry for all this you are going through .

[foxinsocks]

here is \link{http://www.drfoster.co.uk/localServices/consGuide.asp\Dr Foster} - you can look up consultants on here.

My friend had a child born at 22 weeks (who had died in the womb). They were both medical people - all the tests were done but nothing was found. It seems just so horrible to not know why, especially if it happens more than once but it seems there is so much they don't know yet. Perhaps if there was someone who could go over the notes with you at the hospital?

[desperatehousewife]

thanks for advice. Will do some research.

[oinker]

DHW......
The NHS can be shocking.
I have been messed about with them in my local gynae dept for over a year now.
I have finally got an appointment at St Marys (NHS) in Paddington this is where Prof Lesley Regan works from. If you are residing anywhere in London or willing to commute they will see you. If you are in West London like me the appointment takes about 10weeks if not in can take a while longer.
Give them a call even if it's just for advice they are really good. They can be contacted M-F 0900 to 1600 on 0207 886 1323 or 0207 258 0258. I have called them about 6 times and haven't got my appointment until next week.

Good Luck.

[desperatehousewife]

oinker - thank you so much for this info - I cannot tell you how much i appreciate it. A friend of mine mentioned today getting in touch with St Marys. I will call them first thing tomorrow.

[Twiglett]

how are you doing dhw?

[desperatehousewife]

Twig, thanks for asking. i'm ok today - had a terrible low on Sat night - i just wanted to run away from everyone and everything.

Am still feeling quite angry about everything, but the black cloud has lifted. I am going to get on the case to find out if I can see a specialist somehow. I'm always better when I have a 'project' to focus on.

I'm desperately sad that I won't be having a baby in November. Absolutely gutted. And at this stage don't know if I'll ever have the second child I so badly want.

[Twiglett]

I have been thinking of you a lot recently .. am glad you are finding your own way through this nightmare .. I continue to wish you strength

[desperatehousewife]

thank you so much twig really appreciate your thoughts.

[Arabica]

thinking of you too DHW xxx

[oinker]

DHW..

Glad I could help.
Have you given them a call?

I too have had to be quite harsh at my last hospital, Queen Charlottes to get them to test and anylise what was removed from me. I had always thought highly of them as me and my siblings were all born there (although at a different site) and they have had their kids there. they had no complaints. then again they never encountered the difficulties i did.

I really hope that you get the help you need.
))))))))))))))))))))))HUGS(((((((((((((((((((((((

[slinkstah]

i have found some hospitals to have a great reputation for a normal birth but when theres a prob it can be a complete different story. I get sick of people telling how wonderful qc is when i know i had a horrendous experience there.
All my lab reports through my last pg have been lost too, and i couldn't get to talk to anyone about what happened until my 6 week postnatal! and then the dr didn't have any answers.
i chose st marys this time because i know of a girl who lost 2 babies there and had an ok experience antenatally and postnatally (well you know what i mean by ok experience)

i totally agree dhw that this situation needs much furthur investigation by someone who knows there stuff. 1 stillbirth can be "one of those things" (i hated that saying after my stillbirth) but 2 stillbirths is impossible without a cause surely!

im glad the black cloud has lifted a bit, i think focusing your mind on this is a good idea. i did the same after my stillbirth and learnt everything i could about the situation and it did give me something to focus on and lift the pain slightly as it felt like i was doing something.

{{{{{hUgs}}}}}}}

[mygirllolipop]

DHW - hope you are feeling better (well as well as can be). I agree that what has happened to you is more co-incidental than one of those things. A private clinic may do more tests if the NHS deems them too expensive. Hope you get to see a consultant about this, def think it should bbe possible. x

[Marina]

I think you should get some expert advice from SANDS about this DHW. There is an array of tests that ought, in the ideal world, to be carried out as soon as one has the diagnosis of an IUD - although given the extreme horror of the news I am sure most women don't think to ask for these test, I most certainly did not - and my amniotic fluid was not tested, for example.
There is a list of conditions it is worth asking your consultant about in the SANDS book When a Baby Dies which relates to the standard procedures in the NHS - I will check that for you tonight.
Off the top of my head, given you have had the misery of two recent stillbirths I would say that a lot of the infectious potential causes of stillbirth (listeria, slapped cheek, toxoplasmosis, cytomegalovirus) could probably be ruled out. Unless you have been so very unlucky as to catch a different one in each of your pregnancies :(
Something I remember from my reading of some of the American books on this subjects is that accurate Antiphospholipid Syndrome diagnosis is more complex than one might think and you need to be tested for the full array (one sort does not show up on the standard NHS test I think)
I hope they will also automatically test you for a full range of chromosomal abnormalities and for Strep B, although my consultant said that Strep B is not usually a risk until labour starts.
I will check my list tonight. I think one of the books I sent you last time also has the American list in. Not surprisingly it is much longer than the NHS list. If you can bear to look in there, see if you can find that list.
Lots of love, I've been thinking of you loads. Hope you are recovering physically from the blood loss and retained placenta. XXX

[desperatehousewife]

thanks marina - i will check out the books and make my own list and take it back to my consultant I think and ask for reassurance that all these things will checked. And ask if there are any further tests that can be done privately.

I'm feeling much better thanks - obviously have a consitution of an ox which is a relief - my blood count was absolutely fine, even straight after the loss of 1000ml!

x