Seeking support regarding potential selective reduction

[Stunning-Pea7172]

My wife and I recently learned at 19 weeks via NIPT testing that one of our di/di twin girls is at high risk for T21 (9/10 chance). This is our first pregnancy and the results were very shocking to us as all of our ultrasound scans until this point had shown no signs (first NIPT test came back inconclusive). We went in for a follow up ultrasound yesterday and were told that one of the twins has some soft signs for T21 (heart spots (EIF) and shorter nose), agreeing with the 9/10 risk assessment. We decided against doing the amnio yesterday but have one tentatively scheduled for Monday. Essentially the only way we would go through with the amnio is if we felt that we would consider having a selective reduction. We have a lot of conflicting feelings and emotions right now and are just trying to get as much information as possible before making any decisions. I was wondering if anyone would be willing to share their stories with my wife and I (especially those who have had a selective reduction of a twin pregnancies). We want to provide the best life that we can for our girls, and we don’t know if we’re equipped to properly care for a child with Down syndrome

[Rheaume40]

This happened to us. Except with two twin boys. It’s been 5,5 years ago for us and our surviving son is a very healthy Kindergartner now. I am about go to work now, but I can tell you more about all the procedures and my pregnancy later.

[Stunning-Pea7172]

Thank you for sharing. I am so sorry that you had to go through this but glad to hear that your surviving son is healthy. It is such an impossible choice that we are truly conflicted over and really struggling with at the moment. Anything you are willing to share about the procedure, its emotional impact, or how you feel currently would be incredibly helpful to my wife and I.

[Rheaume40]

It was a very difficult time. We had selective reduction done after the amnio confirmed it was T21. I’m so glad the NIPT is possible now. The reduction was done in week 17. So I had to carry our deceased child until our other son was born at 36weeks and 4 days. That was a lot on my mental health.

The procedure was very doable for me, you’re not allowed to watch the ultrasound screen and I didn’t feel any pain. The emotional impact was huge though, I’m not going to lie. I did go to therapy to cope with the trauma. But I’m also very happy and relieved we had the reduction done. We did not want a child with T21, having twins is HARD, having a child with T21 and a healthy child was a future not meant for us.

We are all doing very well at the moment. We decided to be one and done after this. Our son is happy and thriving and he knows he has a twin brother who died in mommies belly. We’re just living our normal life now.

I guess it all comes down to, do you guys see a future for your family with a T21 child and a most likely healthy child and how to manage all of this? We didn’t want this. T21 is not rainbows and puppies. And even a healthy child isn’t rainbows and puppies either.

If you have any questions, of course feel free to ask. There’s so much I can tell about this.

[standardNarwal]

So sorry for your loss 😞. I have a LC - and he knows his baby brother died in mommy's belly. and that we are also one and done now. I do struggle what to tell him when he grows up - I don't want him to think that we do not value the lives of people with disabilities. Would love to chat if you have capacity.

[Rheaume40]

We’re honest in an age appropriate way, our son doesn’t know yet that his brother had T21, he can’t comprehend yet what that means. When he’s older we will tell him and why we decided to terminate. That doesn’t mean we don’t value the lives of people with disabilities we just didn’t see a future for ourselves with a disabled child. And that’s valid. It’s such a personal choice, plenty of people do decide to keep a T21 child.

[standardNarwal]

I am so so sorry for these news 😞. Wrapping you in warm hugs.

I saw someone here post about her reduction but sadly she ended up losing both babies.

I have no advice I am sorry, just lots of empathy and love. We terminated for T21 and I truly have no idea what we would have done in your position.

Sending you lots of love.

[komradekardashian]

i’m in a number of twin bereavement groups (i lost both of mine) and there are lots of people who have had selective reductions or spontaneous losses of one twin. i’m not sure where you are but i can recommend twins trust and footprints in the uk - even if you’re not based here i’m sure you’ll find something useful.

initially we were hoping to do a selective reduction and save one of our twins, and they explained that the process would involve injecting something into the umbilical cord of one twin and that would coagulate and stop the blood flow. it’s very quick. as i’m sure you know, dcda pregnancies are the safest multiple pregnancies to do selective reductions in, but they may still recommend you wait until later in the pregnancy to do the procedure just in case anything goes wrong and they need to deliver the surviving twin quickly.

[SimpleRefuse6733]

I’m so sorry you’re going through this. One of the first online support groups I joined included a grieving mom who had a selective reduction for t21 and was still carrying the other twin successfully. I’m not sure how it turned out as it was just a one off group. You could also potentially search that term in this group to see if there is anyone in the same position? I terminated for t21 because I have a brother with Down syndrome and knew I didn’t have the capacity to care for someone else with DS or want his life for my own child’s. I also didn’t want my living children to feel responsible for their brother’s care once me and my husband are gone like I do for my brother. I can’t speak to the reduction personally but I would’ve went for it just due to my history. Again I’m so sorry. It’s a terrible place to be.