Complicated delivery and I'm beginning to freak out now..

[SellyMevs]

I'm 29+4. I have several health problems that has meant that I've been consultant led from the start. This is my first pregnancy, so dealing with my own health has been a bit tricky.

I suffer with SVT, my heart rate is permanently raised, I am on beta blockers and will occasionally have episodes of fast irregular heart rhythms, however for me this isn't dangerous, it's just symptom management (I get very short of breath very quickly). I also have a very rare bleeding disorder which is even quite unheard of in the medical world. It means that my platelets take much longer to clot and I am at serious risk of bleeding. And to top it all off, I have ME so get fatigued easily and they have said gestational diabetes is looking very likely. My sugars have been all over the place from the start, due to have my 3rd GTT next week. I've already been given advice on diet which I'm pretty strict about.

Because of all the difference specialists involved, I met with them all at 17 weeks and they each gave advice on how to manage delivery. I was told there would be an appointment at 28 weeks to put it all into one birth plan so that it could be crystal clear which treatments I can or cannot have.

For instance, I am not allowed intramuscular injections or an epidural. I have to be given fluids throughout and will need to be administered medication to help my blood clot. I have to do this with pain relief to avoid my heart rate rocketing so only have the option of a remifentanil drip. There will be no use of forceps or ventouse in case baby has inherited my disorder. If I have a c section, it will be under general anaesthetic. They decided vaginal birth would be preferable due to the smaller risk of bleeding and that I won't be induced (unless the diabetes is confirmed).

I had my 28 week appointment. There is no record of any of this advice in the same place, I have several letters that I've pieced together but there is no birth plan. The doctor said it was down to my haematologist. He's given his advice and I have it in writing but he can't write my birth plan for me! She said we would just see how things go and worry about it closer to the time.

This really worries me. I feel that there are too many grey areas and I don't feel safe. I have no control over this and I'm worried that when it all happens, a small detail will be missed, but that small detail could be significant in the well being of my baby and I. This uncertainty is making me rather irrational and I'm now focusing on the risks, however small they are, I can't put them to one side until the doctors demonstrate they can deal with them.

my biggest fear is needing an emergency c section due to the general anaesthetic. I cannot bear the idea of something going wrong, being put to sleep and waking up not knowing where my baby is and if everything is ok. I suppose being awake throughout is the last little bit of control that I have and I'm terrified of losing it. I'd be far more comfortable with a planned c section so I can work through the process before hand, and I don't want a c section at all really (it's the general anaesthetic that worries me). Last night I become so hysterical about it that I convinced myself it was the only viable option for me.

I'm not sure what to do now. I've written a list of questions for the consultant I see this week but I fear the worry is going to get too much. Can anyone advise how to cope? How did you get reassurance? I've never been scared of something like this before but suddenly I'm not convinced I will cope emotionally or physically with childbirth.

I am sorry this is so long, there is a lot going through my mind all at once.

Don't want to read & run.

Are you in the UK?
Only way I could imagine coping in your situation is very much one day at a time. You have an impossible number of things to think about.

I wonder if I would have to write down birth outcome scenarios & fill in the boxes.
So

Elective CS would mean ABCDEF & XYZ.
Plan for vaginal birth would mean ABCD if it goes perfectly, but also possibly all of RSTUV if extra interventions and LJK if it proceeds to emergency CS.

So can't control the outcomes, but maybe can mentally prepared for picture of each outcome. I think I'd have to list the factors all out to find it manageable.

You sound quite in control of the situation, even though it probably doesn't feel like it. What you seem to be missing is one HCP to facilitate bringing it all together and ensuring that nothing is missed. That should be your obstetric consultant I assume.

Can you take someone with you to the appointment to back you up and insist on the detailed plan you need? Because I agree with you, leaving it and seeing how it goes doesn't sound like a good idea.

Thanks, I am in the UK.

I have tried working out all eventualities and working through each one, but unfortunately my DH doesn't like this approach. He is the sort that will Bury his head in the sand and only worry if it actually crops up. I work in emergency health care so my approach is to prepare for the worst case scenario. In this situation I can't seem to do it without worrying myself.

I was happy with the plan but lately there have been a few occasions where I felt the doctors were out of their safety zone. It took 6 hours of waiting to have my anti d because of a bleed last week. All because I couldn't have it IM, so the doctor had to research how to administer it differently, prescribe it himself. He insisted on phoning my haematologist directly, despite me having it in writing from him on what routes it could be administered to me. It's great he checked, but in an emergency I don't have 6 hours for them to ring and confirm every detail that's already in writing.

Selly my heart goes out to you! Is there a way you could write a birth plan yourself then go.through it with your specialists? Also question if certain ones will be on call when you go in. Unfortunately I'm the same with some medical knowledge and always preparing for the worse, I found like a previous poster said writing down all the possible bad things that could happen and talking them over with someone helped.
It should not have took 6 hours to give a treatment when you have written letter from a specialist! Do you have a mw you can speak to about your concerns?

you poor thing i have a much less complicated but similar grey area in my birth plan which is non existent also. all i know is that i have to have a general anaesthetic and elective c section but have a serious reaction to anaesthetic took me 24 hours to come round last time and no ones got any answers for me im hoping that as it gets nearer the time they all pull together as i believe they're meant to be very good at making sure everythings covered but i think they may just wait to nearer the time. but talk to them about your concerns and explain how out of control you feel hope all goes well

Your DH has a point, there is a lot you can't control here. You can only prepare for the most likely possible options & try to be open-minded to what else happens.

I'm afraid parenthood is rather similar, so much you have to do on the fly & not when you expect it.