Selective termination of twin due to Down Syndrome

[DaisyPoppy23]

Not too sure why I’m messaging. Possibly to vent or maybe find people with similar experiences. I could do with some positivity!

I will try to keep this as brief as possible. We were over the moon to find out we were expecting twins (DCDA). We shared the news at about 17 weeks with friends and family and everyone was so excited! We felt blessed! Then, at our 20 week anomaly scan, a heart defect and query over a missing kidney was detected in one of the twins. We were referred to a fetal medicine unit and paediatric cardiologist. Fast forward a few weeks from there and we are told that one of the twin has a pelvic kidney (which isn’t too much of an issue) but also a severe heart defect called AVSD which would mean open heart surgery in the first year of the baby being born. We were then told that this defect meant there was a 50% chance of the baby being Down Syndrome. They sent us for a NIPT test straightaway which came back as highly likely for Down syndrome. We were then advised to have the amino to confirm that this was the case and to also check which twin had it. The amino results have come back to confirm Down Syndrome in the twin with the heart defect but the other twin’s results came back normal. We have decided to have the selective termination as we feel that raising a child with a severe disability isn’t right for our family. We already have a 15 month old and will of course have another new born. I appreciate this isn’t what everyone would do but we have to do what is right for us and our family. The predicament we are having is when to have the selective termination. We were told to wait until 32 weeks to give the healthy twin the best possible chance in case it triggers pre term labour. There is a 1% chance of this happening. I am terrified of waiting that long as I am so worried they will arrive early, as twins often can. I am also not a big person at all and I’m already struggling with carrying them both and running around after my 15 month old. If we terminate now and it does trigger pre term labour then there’s every chance that the healthy twin could be effected and have a severe disability because of being so premature. I am considering waiting until 30 weeks so there is more chance for the healthy twin. I feel absolutely terrified about this whole situation and so completely alone. My family don’t live near me and my partner works 4am until 8pm, 7 days a week. I am really struggling with holding it altogether for my 15 month old. To top it all off, she’s going through some awful sleep regression and I’m absolutely exhausted. I’m usually a patient and laid back person but I feel completely defeated and at my wits end. I honestly feel like I’ve got to the point of not being able to cope.
I wish someone would tell me what to do and that everything will be ok but I know that can’t happen. Any wise and positive words to get me out of this hole would be most appreciative. Also, perhaps any advice on the best time for the selective termination would be really useful. I don’t know if I’m in the best frame of mind to make such a decision. There just seems to be a risk whichever way we go forward. Help!

What a horrible situation you're in OP. I can't give you any advice over the timings etc but I wanted to offer you some support. Often in times of crisis we tell ourselves that we can't or won't cope, but we do. You will cope with this and you will come out the other side of this horrible time.

Thank you AmongstTheCosmos. 😊

An awfully difficult situation. I would find it very hard to terminate one of the twins and certainly not as late as 30 weeks. I would even struggle at 20 weeks. Just wondering why the tests prior to 20 weeks didn’t know possibly of Down’s?

You do not need to justify your choice in any way. I hope you can get through this awful time as gently as possible. I wish you and your family all the best x

I had a baby with DS and a severe heart defect at 34 weeks. Aside from the heart problems, she was healthy and perfect. I really think it would be incredibly upsetting to give birth at 32 weeks as a result of termination.

I absolutely understand where you’re coming from in terms of this being a decision you’re taking because it’s the right one for your family. But please don’t underestimate the effect giving birth at that gestation will have on you. I don’t know what the solution is, other than talking it through with parents who have been through something similar.

The early screenings all came back as low risk. It was only because of the heart defect that concerns were raised and the NIPT test offered.

With a risk of 1%, I would push to have the termination ASAP and get it over with. A later termination is likely to be much harder on you, and I would want as much time as I could to grieve and readjust before the live birth.

This is a horrible situation and I'm sorry some people have given you a hard time. I applaud you for making a tough choice for the good of your whole family.

@DaisyPoppy23 that’s awful. Such a heartbreaking decision but you must do what you feel is best for your family. I wish you the best outcome possible with whatever you decide in terms of the termination timing 🌼

I would do it as soon as possible if your mind is made up, the baby you are terminating is already viable so if you went into labour today you’d loose the option of terminating and youd loose the option not to raise both twins (unless you have one up for adoption I guess). Sorry you are in this situation OP

So sorry you are going through this.

I grew up with a disabled sibling with similar health problems to your baby. Her life was pretty awful due the restrictions her condition(s) inevitably caused.

Down Syndrome is a serious condition and heart problems are common. You must do what is right for your family.

So sorry you are in this situation OP

1% is a pretty low risk, and you have to balance that against your mental health. Obviously it's optimal to stick it up to 31 weeks, but only you know if you can or not - if not, I'd move to terminate ASAP.

Please ignore the people giving you a hard time. No one can know what they'd do in your situation, and it's clear you've thought it through.

OP I am assuming your doctors have counciled you to this, but a termination at 30 or 32 weeks doesn't mean removing that twin from the equation at that point. It means that twins heart will be stopped but both twins will remain to be birthed together as close to term as possible. I just wanted to make sure you knew that. I'm a nicu nurse so I can tell you a little about the difference between 30 and 32 weeks. Developmentally it's quite a big leap. A 32 weeker is much less likely to need respiratory support than a 30 weeker etc. Given your babies are a twin pregnancy they are likely to be a little smaller so than a singleton at the same gestation, so again 30 weeks delivery of twins isn't ideal. However at 32 weeks (although also at 30) your baby will be a fully formed version, just on the smaller side. This might be quite hard emotionally to deal with regardless of which gestation you choose. Also again sorry this is a little grim to think about, babies who die in utero will deteriorate slightly. The earlier you have the termination the longer your baby will be in utero before they are born. There are pros and cons to both gestations here and I think you need to reach out again to your health professionals for advice. They should have a bereavement midwife who can council you on the still birth of your DS twin and what to expect. Sorry you are in this situation OP.

I'm assuming if you opt to terminate at say 30 weeks, there's a limit to how long you can continue with the pregnancy without it impacting on the healthy twin? Is delivering both babies alive and opting for comfort care an option if meeting your poorly twin would be bareable? I don't even know if it's an option with t21, certainly you could opt for it with T13 or t18.

I've no useful advice but just wanted to offer support. What a bloody awful situation to find yourself in. I have twins and was also really concerned about pre term labour, I think you are right to be considering that in your decision but I'm sure you will be well looked after and they'll be fine to discuss their reasoning and consider yours too. Wishing you all the best xx

I know you are going through the mill here but you are saying you have worked with Down syndrome children. This is very disrespectful, they are children with Down syndrome.

Cut off for what? There is no cut off for life limiting disability.

It isn't past the cut off, that would be illegal. Ops abortion will be fully legal

Really helpful comment, so nice of you take the time to comment and put the boot in to a woman going through a huge trauma. Well done you.

@SleepingStandingUp I’m fairly sure that’s not an option for a baby unless they have a condition considered incompatible with life. Many children with DS are born with AVSDs, which are repaired in infancy and cause no further problems.

Sorry, OP. No advice, just wanted to send sympathy for the difficult situation you find yourself in. I think if it were me I would take the 1% risk and terminate earlier for my own mental health, but of course it's easy for me to sit here and say that when I'm not in that situation and it's an academic choice. No easy answers, obviously, but I hope you can settle on the right one for your family

"There are many couples out there who would love to parent a child with Downs and support him or her through heart surgery."

No. There aren't. (how to tell me you know little about adoption without telling me you know little about adoption).

@SleepingStandingUp I suspect if the T21 twin were delivered, they would survive. Once delivered alive, then all efforts would be made, so no option of 'comfort care'. I also wondered about the mechanics of a termination after 20 weeks not impacting on the other twin in utero, but assume OP's medical team have counselled her about that.

It sounds like an impossible situation, OP, to face such a high risk pregnancy, when you are aware you can't manage a disabled child. I would just go with what the medical team advise.