High risk of second trimester miscarriage: coping strategies?

[crazyhead]

Hello all. I have learned that I have a condition (heart-shaped uterus) that puts me at much higher risk of second trimester miscarriage. I am ten weeks and this is my first pregnancy, things were OK last time they looked, but risks are really later in pregnancy. Like many people I daresay, I assumed that I'd be able to relax a bit past 12 week scans, but I think this is unrealistic, and I need to find a way of getting my head around how to mentally 'manage' the second trimester in my own mind. I may of course be lucky, I don't want to be negative but I do want to protect myself.

I know many of you will have been in this sort of situation, and just wondered what coping strategies you had? For instance, we haven't told parents yet abut the pg and part of me is inclined to hold off for some time to try and protect them if it doesn't go well (Mum just had a big medical scare herself).

Apologies to all of you who have been through the worst, while I am just working out how to manage the possibility of the worst.

Hi crazyhead

Congratulations on your pregnancy and I'm so sorry to hear about the risk of second trimester loss for you. Did they give you an indication of the odds/percentages? The normal risks are about 2% chance of loss after 12 weeks I think.

I don't have the experience of coping with a known increased risk of loss, but I have been through a late loss and then a known increased risk of problems with my next baby. When I was 20 weeks pregnant last year, my daughter was found to have died at the routine scan. They found that reason for her death was most likely toxoplasmosis infection (nothing else was detected). By the time we found this out I had just conceived (but didn't know) and we were advised to wait 6 months to ttc to allow the infection to go away and me to build immunity. When we found out I was pregnant we were told that there was a chance of damage to this next baby because of the infection - possibly growth restriction, and possibly brain and eye damage.

We have had a tremendously stressful wait for the 20 week scan to find out if there was any evidence of brain or eye damage and how bad it looked. We have been so lucky so far in that the scan showed everything appears normal. I am now 22 weeks, and still so frightened, which I think is the legacy of a late loss.

How to cope?? One day at a time is all you can do. We chose to tell our parents and some close friends very early on about the pregnancy as we knew we would share a loss with them. I also had to tell work due to my sickness and a hazardous job. We have kept everything quiet from the wider family, partly to protect them, partly because I felt too unconfident about the pregnancy to announce it, partly because I didn't want to be congratulated when we might be phoning 3 weeks later to say our baby had tremendous brain damage and couldn't survive. I also hated the idea of other people getting excited about our new baby when I couldn't, because I was too afraid. I felt that I should be the first one to feel the excitement, not be swept along by other people before I was ready.

I have found a lot of support on MN and posted a lot which has really helped me get through the days.

We bought a doppler when I was 17/18 weeks so we can listen to the baby's heartbeat which helps me to relax a bit, as with our first we know she died a little while before the scan detected it, so the thought of this one having died and me not realising is something I find very hard to cope with.

I cope best if I am as well informed as possible, so if you are similar, then make sure you ask your consultant and midwife as many questions as you need to. Did they tell you what might happen if you do miscarry? Would there be any warning signs? Is it likely to be a silent miscarriage or a sudden blood loss and delivery? Is there anything they can do to reduce the risks? What extra monitoring can you have? Is there a point after which the risk will decrease? Those are the sorts of things I would need to ask if I was you.

What I would say though is that the impact and devastation of a late loss shouldn't be underestimated. Losing our daughter has shattered our world. It was 6 months ago now and I am still grieving so deeply and in tears most days. I was signed off work for 6 weeks, and barely coped when I tried to return - had another 6 weeks of phased return after that. There is no way I could have concealed our loss from anyone, so do give some thought to who you tell and when. For me, it would have been even harder to have had to explain the pregnancy and the loss all at once to our parents.

Wishing you all the luck in the world and a healthy baby. It will be a long hard and worrying road though xx

Thanks for your kind answer spilttheteaagain. It sounds as though you have really been through it, and I hugely sympathise - it just sounds very difficult indeed and I'm so sorry about your daughter. Two of my cousins lost their babies at 24 weeks, and it is just so awful. I really hope that your pregnancy goes well this time - and that it starts to help to heal your loss to some extent. I imagine you are counting down the hours till 38 weeks!

Your thoughts about telling people are really useful. I tend to want to protect my parents from stuff, but I'm sure they'd also want to protect me, and I think you a right that covering up a late miscarriage would be much worse than being honest. The knowing what to expect thing is so true as well - I just want to know the risks, what to do, and what bad news will look like. Bleeding may be grim, but not knowing is a lot grimmer.

I am not quite sure exactly what my percentage risk is of miscarriage - to be honest, I'm not even sure I'll find out in this pregnancy, because this thing I have is very hard to measure or get an accurate diagnosis of once you are pregnant, it may just be afterwards that they can see what my anatomy actually is. Overall, I think that about 2/3 of people with this have a live birth. It can be honestly fine! It's just that many of the risks appear to kick in post 12 weeks.

However, I have an appointment at the prematurity clinic in a few weeks which will help them to assess the situation so I hope to know more then.

Very best of luck, and here's to all of us just looking back to this as a stressful time, but one just to forget about because we have healthy babies in our arms.

I have experience of late losses in the second trimester due to incompetent cervix and also a blood condition. I really hope thst everything goes smoothly for you but just in case things to look out for are obviously cramps,lots of discharge(sorry if tmi but especially if it is pink tinged) or feelings of achiness/discomfort in lower pelvis(these can be signs of premature labour).
The best advice I can give is get a good consultant(I was lucky in that got one of the leading specialists in fetal medicine) and that sometimes you have to be quite pushy to get the treatment you need. For example I insisted on scans every 2 weeks at hospital(they would probably have been happy to scan once every 6 weeks) and I also had all my antenatal care at there as didnt want to have to keep explaining my history to various midwives at gps.
With regards to telling people-we only told close family after 18 weeks and then close friends after 28 weeks(I have had very neat bumps luckily!). We are both private and tend to want to keep things to ourselves. However this can also bring difficulties as you may not then get the support you need(if the worst happens and I really hope it all works out for you).