How to approach booking in, scans etc with pregnancy following TFMR

[baconfrazzlerock]

Hello everybody, not sure if this is the right place to post. I am seven weeks pregnant following a TFMR last year, for patau syndrome. I am really anxious about this pregnancy because of what happened, because I have almost no pregnancy symptoms this time, and because I am old (43, nearly 44, yikes).

I have just received my midwife booking in appointment, for three weeks. Assuming I get that far, I'll be 10 weeks. I have decided not to have an early scan, but I do want a CVS as early as possible. I also really don't want to go through the whole booking-in process until I have a better idea about whether this is going to be viable.

I am not sure how to communicate this though. The midwives are refusing to talk to me until the booking in. Not sure what else I can do. I'm at King's in London. Any experience of this?

I know in our local trust you can contact the screening midwives who may do the booking in, as they will hopefully be familiar with you and can arrange for an early consultant appt and cvs/amniocentesis. Would it be worth phoning the hospital and asking if this would be a possibility? Xxx

Hi OP ,
I don't have any practical advice to offer but just wanted to post my congratulations and best wishes. I had aTFMR last year for different reasons , I'm now expecting again so understand your anxiety and requests. Simply getting to the stage were you are ready to roll the dice again is like climbing a mountain!

In my situation I'm offered an early anomaly scan to pick up on NTDs earlier , a letter from my consultant has given me this entitlement. Do you have a consultant letter on your file that may give you tests etc that offer reassurance earlier rather than later?

Hi Hope and User, thanks so much for responding. So sorry the same happened to you User, and congratulations to you too. I don't have a letter on file - I never got assigned to a consultant I don't think. When it all happened, King's were good from a purely medical point of view, but pretty awful in other respects. For example, at the end of the horrible day they simply sent me away with a number for an abortion clinic and told me to sort it out. In comparison, I think I am trying to gain some control over the situation this time, whatever the outcome. I guess I will try calling the midwives again today, but I feel as though I am possibly being a bit entitled asking for 'special treatment' and maybe just have to wait my turn. I am also so terrified about the scan that I don't want to do it more than once!

I'm so sorry , Bacon! It sounds like your experience was made worse by receiving poor care.

Why don't you see your GP and explain what happened last year? You could have them write you a letter and get a quick referral to another hospital. It may not make it easier for you but if this is about control then that certainly gives you some.

No you're not acting entitled at all, you absolutely need good care and support from the word go.

So sorry to hear you had a cold experience at Kings last time. Would a change of hospital for this pregnancy help at all? Uclh might be good from screening point view

C9ngratulations on your pregnancy. My first dd was stillborn and had Patau Syndrome and dd2 is 7mo. She is healthy, happy and a delight but it was a LONG 9 months! I got a lot of support from the angels and rainbows thread in antenatal clubs - I'd recommend heading over there if it's still going. At booking in, my opening line was 'Have you read my notes?' The midwife answered 'yes, have you ever booked a pregnancy here before?' Obviously she hadn't read my notes and didn't really get it for ages. I wish I'd taken a written summary to hand over to avoid me having to relive the whole experience. I'm happy to talk about the scans and tests I had done if you would like to.