The one where the BROOKERS make babies and blankets and hats and other crochet stuff!

[BeedlesPineNeedles]

I almost put this in arts and crafts, seeing as how we talk about crochet as much as we talk about babies!

I've been brooking lots for trix today x

Thinking of you Trix. Hope that you haven't had to wait long for a scan.

Hope things are either ok trix and the last scan was worrying over nothing, or that it's something that can easily be fixed x

Hi,
So we also ended up seeing the fetal heart specialist at the John radcliffe this afternoon. Our baby does have a whole in the heart and one artery is too big and one too small. At least that's how I understand it in the simplest terms. The baby will need an op but should all be ok. The thing is we now have to decide if we want an amnio to see if there's anything else, a condition that may have caused the heart condition. Depending on the results if we did the amnio (big if) what would we do then, termination was mentioned

Oh Trix . That sounds positive re: heart surgery, in that they didn't mention termination in the context of the heart condition alone.

Did they give any guidance as to the likelihood of there being other conditions over and above the heart problems? Does it usually happen in conjunction with something else?

What a hard decision. Have you had any initial thoughts about it yet?

Oh trix that does sound similar to the friend I mentioned earlier, I'm sure that baby has one artery bigger than the other. They did get testing and no chromosomal issues. I hope they have given you helpful information to help you decide what to do. Do these thongs just happen sometimes? Are they pushing an amnio? If there were something found you wouldn't have to terminate but it could be helpful in preparing for the baby

Brooking for you and your tiny baby - do we know the sex? And loads of love to you and your dh

Yes it could just have happened and there not be any other chromosome issues. I suppose they have to cover all options. I felt as though they were saying it would be best to go ahead with it. I'm not sure how I feel. We don't know the sex. But I am now wondering if we could find out.

Big hugs trix Glad you got to see the specialist, have they given you someone you can Contact with questions?

If you decided that you absolutely wouldn't want to terminate whatever they found, could you just wait and have the amnio a bit later say 28-30 weeks. So you would have enough time to prepare if they did find anything else wrong, but you wouldn't be having the tiny risk of something going wrong by having it now.

That's truebeedle I've heard of people doing the amnio later. trix what happens next, do you have another appointment set up? I'm sure you could ask to find out the sex, you'll probably be having a lot of scans

Yes I need to have it before 24wks or as Beedle says later on. Later though could cause preterm labour which obviously they don't want with a baby with a heart condition but they should be able to stop that.
They will scan me every 4-6 weeks. The midwife is going to ring today to make arrangements.
We have leaflets etc but I think I need to talk a few more things through. I'm worried that the baby will have something really terrible and life limiting.

I hope you can have a good discussion with the mw, I'm sure you have loads of questions. I think the risk of preterm labour is small, esp if done by someone experienced. Also you could look at www.arc-uk.org and/or ask a question on the antenatal tests board of mn to see if anyone has experience

Let us know if you'd like us to brainstorm questions. Your head must be spinning.

Can you arrange a consultation with either the midwife or the consultant now Trix? The medics will always try to cover all bases and eventualities so don't feel pressured into having an amnio if you really don't feel comfortable with it. Standard procedure is just that - standard procedure, rather than a procedure that's tailored for the Trix's preferences.

Contacting others as Keep suggests is a good idea - always helps to get views from people who've needed to make the choice before. And yes, we are 100% here for you to bounce thoughts and frustrations off.

I think also leaving it later makes things more difficult if we do decide to end the pregnancy.
We have another scan & chat with the fetal med consultant on Friday in the hope it will help us make some decisions. We will hopefully find out the sex too. I think we are leaning more towards the amnio now but I keep changing my mind. I don't want to decide any of this. When we lost our little boy before N the one thing I was glad of was that the baby had passed away before we had had to make that decision for ourselves. He had a chromosome missing, no nasal bone and an umbilical hernia. That also makes me feel as though it's likely that this one will have other problems too.

Oh good glad you've got a consultation on Fri. It's not fair that you have to make these decisions But you only need to do one thing at a time - you can't plot out all eventualities now.

My understanding is you'd only leave an amnio until later if there was no chance you wanted to end the pregnancy. I'm glad you have another appointment booked. I guess your decision will be informed by - likelihood of another condion and what that might be, what you think you might do if there was another condition, risk of harm to the baby from an amnio, prognosis if there is no other condition. It sounds like this is v different to your previous baby, though worth asking. I'm so sorry you are having to make these decisions. :( Have you told anyone in RL? I know you're very close to your mum.
I agree you just need to take one step at a time.

Family and a few friends know, we thought we may as well be honest. I don't feel at the moment that I could say 100% either way as to whether or not I would terminate. Previously I would always have said no but now I'm here I'm not sure. I feel awful for saying it though. It really would depend on what excactly we would be dealing with.

It's good to tell people if it helps you. Don't feel bad to say that! I don't think we can ever know until we are in that position. Doing the amnio would give you more info and then as imps said that may be another step, but we will be brooking it will be all normal and there won't be. Huge hugs x

Have there been any brookers that have had even a slightly similar situation? I feel like there was someone but don't want to name in case I am wrong.

Nit tge same but Bartlett had a little girl with I think Edwards syndrome, she didn't terminate but her DD died in utero. I can't think of anyone else.

Yes, Dino sadly went through similar with DD1.

I wonder if they are around

I'll get her off fb for you xx

Hey, just popping in. Sorry to see this, cartoon. Will read up what has been happening and then come back.

Ok, sorry to read about your DC's heart problem, particularly knowing all the problems you have had in the past.

Here are just some initial and probably fairly randomly listed thoughts but do come back to me here or by PM if there's anything else I can answer about our baby or point you in any directions.

Firstly, termination is legal in the UK until term in cases of severe disability, so you have beyond the 24 weeks mark to make that decision, so it doesn't need to be a decision made in a hurry.

Also, a number of people have spoken lots about ARC. I didn't use them myself but other people have spoken of them highly in terms of having an independent person to speak to about results.

DD1 died in utero due to holes in her heart (atrioventricular septal defect) causing hydrops, likely caused by her Turner's syndrome. (99% of babies with Turner's will die in utero, mainly in the first trimester. The ones that survive actually do really well.)

This was all diagnosed after the 12 week scan. At that point, we were offered a termination. That was never going to be an option for us and we declined it straightaway, and, to their credit, even when her death was pretty clear, they never mentioned it again.

We were also offered amniocentesis. I didn't want the risk of miscarriage (around 0.5-1%) and declined this as well. However, an Obs and Gynae friend suggested that should DD1 live to closer to term, we could consider a late amnio where the risk is far, far less and would have a risk of preterm labour. This would allow a genetics diagnosis and might have helped with birth and immediate care planning. E.g. palliative care or delivery near a centre that did neonatal heart surgery. That's something we would have considered but, of course, didn't get to that stage.

Fetal Medicine were fantastic. The consultants were great and the midwives were so helpful and happy to be called to discuss things. Do ask anything, no matter how silly or obvious you think it is, and feel free to ask things again and again so that you understand them. It is very, very easy to forget things you were told in a consultation. Ask them to send you copies of the letters to the GP so you can remember. (In a bittersweet sort of way, I also really appreciate still reading through all the scan reports and notes.)

The consultant might tell you the sex even if it isn't normal protocol. Ours also let us record the sound of DD's heartbeat. I don't listen to it very often at all, but I am glad we have it.

Will have a think in case there is anything else... Will keep you all in my prayers meantime.