Anyone in the UK?

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Re: Anyone in the UK?

Post by killiegirl » Fri Aug 05, 2011 07:58 am

Thanks Lornarose. I'm a Lorna too :)

Re: Anyone in the UK?

Post by lornarose » Thu Aug 04, 2011 04:49 am

I am across the water from you in Ireland, dear neighbour. I am so sorry to hear of the loss of little Ruaridh. A beautiful celtic name. Just wanted to let you know I read your message and was thinking of you. The support and info on this site is very good and hard to find locally. love, lorna.xx

Re: Anyone in the UK?

Post by jules2 » Thu Aug 04, 2011 03:20 am

Hi,

Yes I was tested for thrombophilia several times - all negative. My ob (who was also a PE expert) also told me that increasingly the evidence does not favour heparin even for women who have thrombophilia - so really did not want me on that. I do understand the desire to want to do something different - but really I think what happens is largely chance and out of our control. Low dose aspirin only has a small effect at best etc whenever its started. Its really hard to just accept that I know. Every pregnancy is different (different placenta etc) and for us that is a good thing.

I still think you should have a pre-conception appointment to minimise the risks as far as you can with an experienced consultant ob - its really hard to be pregnant again and you need to feel you've done everything possible. I had two (as I moved between pregnancies). They will at least clarify the care you should expect and talk you through what could happen next time. They may also be able to help address any individual risk factors you might have e.g. they might advise you to wait until you blood pressure has fully settled, I'm not sure. In my case, for example, my consultant ob correctly deduced (based on the severity and unusual PE and HELLP I had) that I had probably sustained kidney damage (sadly correctly). I then saw a renal specialist who tried to do everything possible to minimise my risks before I got pregnant again (that ended up being nothing but at least I knew everything really had been tried).

Of course I understand how much you want another baby. I wish so much that you hadn't had to find us here and that little Ruaridh had at least got longer inside. Its very early days for you and very tough to cope with. Keep posting here if its helps, there are many women (US and others) who will understand what its like to lose a baby like this - something you won't find much elsewhere. Thinking of you both x

Re: Anyone in the UK?

Post by killiegirl » Thu Aug 04, 2011 09:48 am

Thanks, that's good to know.
I was scheduled in for scans every 4 weeks from 24 weeks last time. Everything was fine at the 24 week one, as was my bp and protein, etc, but just 5 days later I had HELLP so badly I wasn't even allowed to be awake for the delivery. I'd been on aspirin from 17 weeks due to a high afp result from my blood tests but I've since read it doesn't make much difference, if any, if you start it that late. So going for a similar approach this time would worry me a lot! Was heparin mentioned to you at all? Were you tested for thrombophilia? My GP is arranging that, I'm doing it now as apparently testing takes 8 weeks!

I've asked my GP for a referral to a specialist here in Glasgow but I want to be prepared and have as many questions as possible for when I meet him! Did you discuss your care package with anyone before you tried again?

I'm only 30 (my birthday was actually the day Ruaridh died :( ) but as I'm sure you can relate, I can't imagine my life now without a baby in it. Although I only lost him 5 weeks ago, it's over 9 weeks since my section so my body is basically healed, though bp is still up slightly (130/85-ish compared to 120/80-ish when I conceived last time.)

Re: Anyone in the UK?

Post by jules2 » Thu Aug 04, 2011 09:00 am

No real preparation except emotional I guess.

I took low dose aspirin, calcium supplements and high dose folic acid from 12 weeks. If you've been offered a care package for a subsequent pregnancy that you want to run by someone else just let me know. I would expect you'll be offered as a minimum uterine artery dopplers at 22-23 weeks, and growth scans from about 24 weeks onwards (regularly every 2-4 weeks or so). I also had scans at 8,10, 12, 16 weeks because of the mcs I'd had. And the rountine screens for downs and 20 weeks scan.

I started trying to get pregnant again very quickly partly because of my age, [though I did not have a c section]. It took me 10 months or so in total as I had two miscarriages in between, and stopped trying for a while whilst I was having some kidney investigations.

Hope this helps a bit

Re: Anyone in the UK?

Post by killiegirl » Thu Aug 04, 2011 05:10 am

Thanks Jules. So happy to hear you've now got a healthy daughter.
Can I ask what preparation you did before your 2nd pregnancy, and were you on aspirin, etc, during it?

Re: Anyone in the UK?

Post by jules2 » Wed Aug 03, 2011 04:44 am

I'm so so sorry to hear about your son, and hope you can find the support you need here. Yes, I'm one of the active UK members here. There is a small UK support group, but its not very active compared with this one.

My first daughter died (stillborn) at 26 weeks over two years ago now, my wonderful second daughter is now 7 months old and I love her more and more every day :-).

I guess I am one of the success stories you wanted to hear. I felt I had a lot against me (39th birthday during my second pregnancy, some kidney damange diagnosed after the first ) but my second pregnancy had no PE, no high blood pressure, just normal throughout. There were less serious complications necessitating c section and an ante-natal stay, but really I couldn't have given a damn about any of that, just reaching full term was marvelous.

Although you are "high risk" maybe it helps to remember that what happened to you in your first pregnancy was so extreme that its really really unlikely to happen again quite as early / badly. I totally understand you feeling that you "couldn't go through that again though", and I still worry now about something happening to my second daughter to an extent that I would never have done, if it hadn't been for losing my first. I accept what happened to Alice now, but even with two years passed it is still very painful.

Let me know if I can help in any way with UK care, or anything else. I moved between my two pregnancies so have a good idea how the system works there. I'm almost certain you will be very very well looked after anywhere when you get pregnant again; my care was excellent.

Thinking of you and your son

Jules

Re: Anyone in the UK?

Post by killiegirl » Wed Aug 03, 2011 05:46 am

Thanks for your replies. I've been lurking in the forum for weeks and have found so much useful information already.
There just doesn't seem to be a UK equivalent unfortunately, certainly not on this scale.
I guess the main thing I'm looking for is stories of people who've had something like this happen in a first pregnancy but gone on to have a healthy pregnancy second time round, and what they did differently. I couldn't go through this again. :(

Re: Anyone in the UK?

Post by riehlism » Tue Aug 02, 2011 07:46 am

Welcome to our forums. I am very sorry you had to find us here. While I am not from the UK, there are active UK posters, and posters from Australia. From my understanding the Australian health care system is similar to the UK. I am sure they will chime in for you.

I also lost my baby boy last year and also delivered at 24+6. While most of us may not have insight in the UK health care system, we do have a lot of information and experience to share. I hope you find this site as helpful as I have.

Re: Anyone in the UK?

Post by kerisue » Tue Aug 02, 2011 06:56 am

There is a member from the UK I know was active recently. She lost a little one named Alice and then had a second baby I think named Rachel. Ugh, I can't remember her name (interesting that I can remember the babies names though!) maybe someone else remembers her user name? then killiegirl could send her a private message.

I'm so sorry to hear about the loss of your son. I lost my baby daughter to this disease - she lived for awhile in the NICU too. Such an incredibly difficult time, full of hope yet with the spector of devastation around the corner the whole time.

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