29 weeks, contemplating termination for medical reasons

[notinagreatplace]

Having a really tough time this weekend.

We had a bad 12 week scan with a high nuchal (5mm), high odds (1:4) of trisomy 13 with some soft markers (very high heart rate, single artery umbilical cord), and what looked like a missing right forearm.

The CVS came back normal, the nuchal reading went down, the heart rate went down and they spotted the third vessel in the umbilical cord, so we were told that it looked strongly like a one off problem with the right arm. That was confirmed by a few different scans.

Then, last week, the consultant said that he was concerned about the left hand, we went back in yesterday for a scan with the geneticist and she confirmed that both hands now have problems. It looks like the baby has 'split hands' on both sides - i.e. a thumb and a little finger and maybe one or two small fingers in between. That makes it, apparently, much more likely that there will be associated problems.

I don't think my husband and I are well equipped to parent a seriously disabled child. If it was just the problem with the hands, we might proceed but with the prospect of wider problems, I think we need to terminate. But at 29 weeks, it's just so hard. This baby was the result of 3 years trying, 3rd IVF attempt, with donor eggs (even though I'm only in my early 30s).

I just don't know what to tell friends/family/work. My parents are going to be devastated. I'm terrified of the actual termination procedure - at 30 plus weeks (which I guess it will be by the time that they can fit us in), I assume it's basically like normal childbirth but without getting a baby at the end of it. I can't believe we let ourselves get our hopes up as clearly having a baby is just one of those things that other people can do but not us.

Don't know what I want from posting this, really. I don't think we'll be telling anyone in real life (will probably tell everyone that it was a stillbirth) so maybe just to put it out there.

Gosh - you poor thing. What are the implications of you continuing with the pregnancy? I am not sure I could cope mentally with such a late termination unless it was to prevent immediate suffering to the baby (I really don't mean that to sound judgemental although I realise it is -its not meant to be) and the decision was taken out of my hands. Please make sure you get every bit of info you can before you make a decision as doubts will haunt you. Such a shit place to be - I am sure whatever decision you make will be for the best. I would be considering exactly the same as you but I know I would struggle mentally afterwards so please make sure that you access support. Have you had any counselling?

from an internet stranger. I am hoping for you.

There are three options, though, aren't there?

1. Abort
2. Have and keep the baby whether it has problems or not
3. Have the baby and then decide once it is born how serious the problems are and if they are serious then have it adopted.

3 gives you a chance to assess how bad it is once it is here rather than having to decide before birth and without full information.

Hi I had two tfmrs. The first was at 26 weeks. It took three weeks from a late anomaly scan to make that decision. It was important to take that time and I think it helped me deal with it afterwards though I grieved for around 6 months - until I was pregnant again. I remember the circular decision making, it is very hard to know what is 'right'. I was lucky that my baby's issue was relatively commonplace and would have meant a shortened life span 50% chance of reaching 5, I was able to read blogs about people living with it.

I understand that you cannot predict what is going to happen but life is quite tricky and I feel that it is better to start from zero than from -5, what happens after that will be dealt with and with the best will in the world you do know what is to face your child to a degree on the physical side. I would suggest that you don't rush anything and that you undertake as much as you are able to get a picture of what will face your child before taking a decision. The MRI may help you make up your mind. I wanted to do it as soon as possible as i felt there was a ticking clock as you must be feeling also so near to term.

Speaking from personal experience I couldn't have chosen to give birth to a baby and not take responsibility for it. Those 3 options might be strictly rational but they don't seem very practical given the OP's situation.

OP, I hope all going ok with you and you're able to get more information which will help you make a decision. Whatever you decide it's your choice and you need to make the right one for your baby, your family and yourself. Thinking of you and hope you're holding up ok.

3. Have the baby and then decide once it is born how serious the problems are and if they are serious then have it adopted. 3 gives you a chance to assess how bad it is once it is here rather than having to decide before birth and without full information.

Sorry JaneParker, I think that is an awful thing to say to the OP, who clearly desperately wants/loves this baby. Deciding to terminate is not always about rejecting a child - it is can be about saving them from the suffering they might experience in this world.

OP I wish you peace in your decision making and I'm so sorry you are facing this. The only advice I can offer is perhaps to do whatever you feel is kindest to your baby, whatever that is.

I want to echo what choochootrain1 has written. As someone who initially placed their baby into care with the plan to adopt (for personal reasons nothing to do with the baby) I found it somehow offensive, not sure why but something to do with it not being about the rejection of the child!

Just more and more hugs I'm just sorry that you have uncertain information on which to consider such painful and difficult decision making.

I haven't been in this position so I hope you don't mind me commenting.

First of all I'm very sorry this is happening, it's very unfair.

Have doctors told you that you would definitely qualify for a medical termination? Have they indicated at all what the associated problems would be? You need to know this.

Personally I'd be worried about aborting and then finding out it was 'just' a limb defect - how would you cope with this?

Why don't you think you could cope? Could you perhaps ask to talk to someone professional about this? Just so you're totally clued up?

As someone said up thread and I really hope I don't cause offence, you could have a perfectly healthy child at birth and then days / weeks / months / years later something could happen / become apparent and that wouldn't be the case anymore.

I wish I could make this easier for you, I really think you need as much info as you can get on every option and I'd delay making a decision until you knew everything there was to know. Be pushy, be heard and fight for the help and advice if you need to. Good luck.

I meant also to say that when I had both tfmrs I made the decision based on the information I had at the time I promised not to beat myself up if it was then discovered that the baby was not as bad as predicted or if there was a massive development in science that would have eased my baby's suffering.

It is nice to imagine you could push for as much help and advice as possible but IME doctors wont make the decision for you and neither will they give you clearcut advice as this is all about statistics. What you have to do is everything you possibly can and decide some parameters for yourself and then it is a bit of a leap in the dark but you are doing what you can and no decision you make will be a 'good' one but it will be the best you can make in the circumstances.

I agree with choochootrain and pizdets. I would never have considered adoption as a route for me personally and this is not about rejection of the baby, it is about doing what is best for the baby as a parent. I had two other kids and I consider this baby a child of mine in the same way as my living children.

To respond to a few questions:

Yes, the doctors are very clear that I do qualify for a medical termination. And, though they are obviously not explicitly steering us, it's sort of obvious that that's what they think we should choose.

Adoption would not be an option for us - for a combination of reasons mentioned - but we did discuss it.

The horrible thing about the issues that we have is that, although the hospital are genuinely trying to get us all the information that they can, it is unlikely to be complete. The MRI will tell us if the structure of the baby's brain looks ok - if it doesn't, we will terminate. The additional chromosome analysis may show up something that explains the problem that we have - at which point, we might have enough information about the condition to make a decision. The discussion that we have scheduled with the paediatric surgeons may tell us what kind of functionality the baby could have in his arms.

But there's a very real chance that the MRI and chromosome analysis will come back ok but that the baby could still have a serious condition which is not visible at this point. Having read just about everything on the internet about limb defects, our baby's just don't fit any of the standard patterns - it isn't a straight forward reduction problem, it isn't a flexion problem with lots of joints, it's not clear that it's 'split hands' - and that, combined with the high NT, is I think why the consultant is so negative. It does seem like it's very possible that it is a very very rare genetic condition.

I think we have to accept that we will be taking our decision without all of the information that we would like and that is so frustrating.

I think we could cope just fine with a child with some additional needs - e.g. simply the limb problems. What I don't think we could cope with is a child that needed 24/7 care for the rest of their life. Well, obviously we would cope with it because we'd have to but I think it would it make us miserable. I do realise that this can happen with any child but there's a big difference between making a decision to accept the small risk that it might happen with a healthy baby and making a decision to accept a much larger risk. Basically, we're trying to make a decision that is the right one for the three of us.

Hi notinagreatplace I am about to sign off but will check back in tonight. If you would like to pm me with any questions about procedure or anything else do feel free. I terminated at 26 weeks in 2007 and at 14 weeks in 2010 so I have experienced a late termination too.

I think it is important that you are going through all of this as it will lead you to a decision. The first time around we saw two heart consultants, the first was very negative and the second was more positive. I went home elated then after an hour I realised that it meant absolutely nothing. It was just really really bad or a bit worse, not healthy or ill. You will go through your mri and all your appointments and, even if you don't know more, you will know what you don't know iyswim. Then you will need to make a decision I was amazed that after the rollercoaster I was able to feel so strongly in the end. I thought I would never know what to do but the process led me through it.

Can you take your mind off it somehow? go for a walk in the park, box sets in the evening. I knitted a blanket while crying, eating chocolate and watching the wire all at the same time. thinking of you at this moment.

i meant feel free to pm me

No advice but so sad to hear about your situation. When you make the decision it will be the right one but as others have said you need to be as informed as you possibly can be.

I'm sorry to hear you are going through this and wish you all the best. It can be hard to get enough information out of the doctors to make a decision sometimes, especially when they can only say that something is likely, not definite.
I agree with other posters that the choice to adopt isn't really a choice, I too could not bring a child into the world to give them away particularly if they would have a life of suffering.
You have to imagine the worst case scenario of both outcomes and which you could live with.
If you aborted, and didn't go on to have another child or
If you didn't abort, child lived but was very very disabled

Yes, both would be shit but which would you be able to live with the best?

Of course these are just the worst case scenarios and don't take account of other possible outcomes eg abort and then get pregnant again soon after an have healthy child / don't abort and child is not as bad as you thought.

But it would be my way of trying to make the decision logically

I wish you all the best with this difficult decision

So, we had the MRI and it showed up some brain abnormalities and so we had the injection on Friday and the induction/delivery Sunday/Monday. Finally got home late afternoon yesterday after a lot of waiting around.

It was and is horrible but, having seen the baby, I know we made the right decision - he was tiny, half the size that he was supposed to be based on the scans (and that was very small), and just didn't look at all well. The geneticist stopped by to give us her preliminary diagnosis - a very rare genetic syndrome which involves severe developmental delays and likely serious autism-like behaviours, along with the limb problems. Based on his size and the severity of the limb and brain issues, he would likely have been on the more severe end of this syndrome.

Finally knowing something is obviously really helpful but we're still having a tough time and it feels like it's going to take a long time before we feel anything approaching better.

Oh sweetheart . So so sorry that this has been the end result. I guess at least you got some certainty and are able to have confidence that your decision was the right one, that's something. Take care of yourself and each other, take all the time you need to grieve your loss.

I am so very sorry for your loss. I know words from a stranger on the internet may not mean much but I think you have been incredibly brave and strong and I hope you take all the time you need to grieve and look after yourselves.

Another internet stranger thinking of you today.

So sorry for your loss and for the difficult time you have been through.

Be kind to yourself as you come to terms with this.

Thinking of you op xx

I'm so sorry for your loss, be kind to yourself and try to find some small comfort in knowing you have made the right choice for you. Thinking of you lots and sending lots of love xx

What a difficult decision you've both had to make. Thinking of you and hoping you are doing ok.

Oh gosh. What a terrible decision you had to make. Thoughts are with you.

Just to say that I am thinking of you, please take the time to grieve for your baby, and be kind to yourself. Take it a day (or an hour/morning) at a time. I'm so sorry for your loss.

Really sorry for your loss, but I'm glad you got some answers and hopefully will feel at peace with everything, in time.

So sorry for your loss and my thoughts are with you.