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29 weeks, contemplating termination for medical reasons

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notinagreatplace Sat 14-Jun-14 11:04:22

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.

Zephyroux Sat 14-Jun-14 11:07:01

I'm so so sorry, I don't know anything about these things but a stranger over the internet is thinking of you and your partner at this very difficult time.

StealthPolarBear Sat 14-Jun-14 11:08:24

Shit im so sorry. No advice but thanks

OwlCapone Sat 14-Jun-14 11:10:56

I have nothing helpful to say either but I wish you all the strength and support you need to get through this situation.

lotsofcheese Sat 14-Jun-14 11:16:13

I'm sorry you find yourself in this situation. No experience of this. Would ARC be worth a phone call? Or a 2nd opinion? Perhaps some counselling through the unit where you've had scans? Sorry to ask so many questions, am just thinking of potential sources of support for you at this difficult time.

GingerRodgers Sat 14-Jun-14 11:26:15

thanks notin
I'm so sorry you are going through this. Please contact ARC as pp said.
Don't feel you have to tell anyone any details, it's no ones business.
Keep posting here if it helps.
Please know we're thinking of you x

Pizdets Sat 14-Jun-14 11:40:23

I'm so sorry to read your story, what a tough time. We terminated a pregnancy 2 years ago at 18 weeks and it was an awful experience - much of what you say about 'other people' being able to have babies rings very familiar. But 2 years on I am sitting here with my healthy son watching him play. These are dark times but you will get through it.

Like you, we had a high nuchal at the 12 week scan then the 'all clear' from amnio a few weeks later. We allowed ourselves to believe it was probably 'just' a heart condition which could be managed and that we'd get our baby, however the full karyotype 2 weeks later showed she had a very rare chromosomal deletion and that she was unlikely to survive the pregnancy or have much quality of life at all. Did you have the full karyotype done? perhaps that would help you she'd more light on the problems and help your decision?

I can't imagine how awful it must be to make this decision at this point in your pregnancy but your friends and family will understand it isn't one taken lightly. Definitely get in touch with ARC, they are great for advice and I've made friends through the charity who have been a huge lifeline to me.

Thinking of you and sending lots of love.


Biscuitsneeded Sat 14-Jun-14 11:43:41

No advice I'm afraid but my every sympathy. What a heart-wrenching situation to be in. I fully understand why you don't want to talk to people in real life; I hope that with the anonymity of the internet you will find support. Please ask your hospital now about any support they can offer.
It's a different situation, but my friend's first child died in the womb at 38 weeks. Although it was an awful time she has some positive memories of the birth of her daughter. The hospital gave her all the pain relief she needed and she is glad she met her daughter and was able to hold her. I hope that will reassure you a little bit about the delivery. I wish you all the best and will be thinking of you xx

SecretWitch Sat 14-Jun-14 11:53:58

I'm so very sorry you are going through this. You have the right to make your decision without feeling judged by others. I'm guessing right now you must be feeling a whole lot of sadness and anger. My heart goes out to you..xx

notinagreatplace Sat 14-Jun-14 11:55:36

I can't really talk about it without crying, which rules out calling ARC or anyone else sad

We did have the full karyotope done, which was fine. The consultant has asked the lab to rerun it with this in mind but that will take about a week - basically to see if they can pick up any minor deletions/imbalances that weren't spotted before.

They're also getting us booked in for an MRI to see if there are any brain malformations (it doesn't look so from the normal scan). And an appointment with the plastic surgeons to talk about what could be done for the baby's hands.

But I think the one thing that we really want to know but doesn't seem to be possible to know is how high the probability is that the baby has associated developmental problems. I know it probably makes us sound like horrible people but we just wouldn't deal with that very well, it would make us very unhappy.

At this stage of pregnancy, I just don't know whether it's worth waiting another week for tests that likely won't change our minds.

GingerRodgers Sat 14-Jun-14 12:41:23

You are not horrible parents at all! You're being honest and that's fine. I couldn't do it either. Some people can but others can't and that is ok. It doesn't make you any less than human. Please don't think of it like that. You're making a choice for you, your relationship, your child and your future. That's part of growing up and being responsible. Those choices are hard, more than anyone can imagine but you can make the best decision for you and have faith in that.
ARC will not mind if you call and cry, sometimes it's easier to talk to strangers and just let it all out x

crispyporkbelly Sat 14-Jun-14 12:49:53

I'm sorry you're going through this. You can never guarantee any baby wouldn't have developmental problems even if all scans are clear though.

My dnephew has severe learning difficulties as a result of chicken pox. My ds was scanned all normal and at 18 months is showing signs of ASD.

I'm saying you have to always be prepared for these things when having children, even if you don't think you are the sort to be able to deal with it.

I wish you al the best with your decision, must be so hard

Laceym1987 Sat 14-Jun-14 13:22:33

Hello I've no advice but couldn't pass by without saying I'm so so sorry your going through this after your years of trying. I know you must be utterly devastated by the news but you are not bad people for thinking this way. It's just unfortunate that the baby is so far along which I makes it even more difficult. Huge hugs xx

Branleuse Sat 14-Jun-14 13:38:37

i think youre scared, youre grieving the envisioned normal child, but your babys problems are not in anyway incompatible with a normal life. Youve tried so hard for this. Its just an arm.

RandomMess Sat 14-Jun-14 13:53:07

I think I would be waiting for them to rerun all test for them to establish to the best of their ability exactly what conditions your baby is likely to have. I think you need to be sure in your mind that what level of disability your child is very likely to have.

In terms of actually giving birth, the grief etc. waiting an extra week or two won't make a huge difference. Don't put yourselves under pressure to make a quick decision.

Big hugs I can't imagine how you are both feeling flowers

Biscuitsneeded Sat 14-Jun-14 14:04:55

Sweetheart ARC will be very used to people crying. I know I did when I phoned them to talk about having an amnio after a bad nuchal/bloods result. Having had 2 miscarriages I was terrified of doing anything that might cause another, but my DP felt he had to know for definite as he also felt he would not cope with a child with certain disabilities. The charity exists because people have to face these awful dilemmas, decisions, even gambles if you like, and it's a very traumatic time. Don't be afraid to cry down the phone. You need support with whatever decision you make (although am I right in thinking your mind is pretty much made up and you just need understanding and support now?).

MrsMcEnroe Sat 14-Jun-14 14:08:12

Oh you poor love. You are absolutely not horrible people at all, and in your shoes I'd be considering my options exactly as you are. I am so, so sorry that you're having to go through this.

I agree that an extra week of waiting for further test results won't make a huge difference to the eventual outcome, whatever you decide, so might be worth considering?

It really, really sucks. Massive hugs to you both x

MrsMcEnroe Sat 14-Jun-14 14:09:42

Oh and don't worry about crying in front of people - it will be expected in your situation. I know it's horrible for you to have to talk about it, but ARC etc will be used to dealing with people who are very upset and they will understand.

SweepTheHalls Sat 14-Jun-14 14:10:06

Just the thoughts and thanks of another Mumsnetters. I am so so sorry you are going through such an awful decision.

BitchPeas Sat 14-Jun-14 14:15:05

Please call ARC. I've sobbed down the phone to them numerous times after terminating for anecephaly. They are used to it. And they are lovely ladies who have been there.

I'm so sorry you are going through this flowers

MimsyBorogroves Sat 14-Jun-14 14:21:23

Another person thinking of you here, and listening if you need to offload.

bronya Sat 14-Jun-14 14:22:32

Whatever happens, I hope you can come to terms with it, and that you do have success in the future.

Lottapianos Sat 14-Jun-14 14:26:04

I'm so very sorry you are facing this OP. I would feel the same in your position and would be exploring the same options. Thinking of you both

divingoffthebalcony Sat 14-Jun-14 14:30:08

If it were me, I would need more information. I totally understand why you feel you couldn't parent a profoundly disabled child - I would feel the same way - but on the face of it, hand and/or arm abnormalities do not necessarily mean a poor quality of life. I think quality of life is the key thing. I hope you get more answers really soon.

Viviennemary Sat 14-Jun-14 14:38:05

I too am very sorry to hear about this. I agree with divingoffthebalcony and would want more information. I understand why you feel you couldn't be a parent to a very severely disabled child and don't know what I'd do in your situation except seek advice from the organisations mentioned.

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