Two baby’s with Down syndrome

[Hall1995]

Hi everyone, does anyone have any experiences of having 2 babies with Down syndrome?? I’m currently 25 and 2 years ago I found out I was pregnant and the baby had Down syndrome. My pregnancy sadly didn’t go to full term. I’m now 7 weeks pregnant and when doing research it states you’re more at risk if you’ve had a previous baby with Down syndrome. Has anyone had 2 babies with Down syndrome or has anyone had one and then go into having a pregnancy that isn’t?
Xx

Firstly, sorry for the loss of your little one

I have no personal experience but a colleague’s eldest son has Down’s, and he has 2 younger siblings who don’t. I also used to look after a little boy with Down’s and his baby sibling didn’t.

I think although there can be an increased likelihood with these things, the probability is still fairly low. Congratulations on your new pregnancy!

No advice as such but you can get the harmony test from 9-10 weeks if you want to know as soon as possible?

There was a thread on this not that long ago, some people knew better than me but there is a difference in what type of downs. Most are not actually genetic and it's just a fluke.

My last baby we lost had down syndrome and our genetic testing shown it was not that type. Sorry I'm probably explaining this really badly, hopefully the clever people will be along soon.

I'm currently 15 weeks pregnant and everything is looking great, many many midwives and doctors have told me it would be be very very unlikely for it to happen again.

Hi @Hall1995 I'm sorry for your previous loss. Did they tell you what kind of Down's syndrome your baby had? There's 3 types. Full trisomy 21 is the most common and there's a raised chance of having another baby with Down's syndrome, but it's not huge. Mosaic Down's syndrome is rarer but as far as I'm aware also similar chance of recurring. Translocation is the type that is properly genetic and is more likely to happen again. This type is also quite rare though.

My little girl has trisomy 21, and I'm 22 weeks pregnant with number 2. I was able to get the NIPT test on the NHS here in Scotland as I had a history. It came back clear so I'm happy that this baby has no genetic abnormalities (although I know NIPT has a very small margin of error)

My NIPT was arranged by the genetic counsellors. I saw them after my daughter was born and they gave me a number to call if I ever got pregnant again. It's worth asking your midwife or GP if anything like this is available in your area? Just for peace of mind. I know of lots of families who have a child with Down's syndrome and then went on to have more "genetically typical" children.

The unknown is scary, but my little girl is 6 now and she is amazing. She's healthy and happy. She's a complete monkey, but I wouldn't change her for the world. There are some associated medical risks etc but there's lots more positive stories about our children than health professionals let on, so please don't worry too much. If you need it there's a massive community of very friendly people in the Down's syndrome community who can give support no matter what you choose.

@bump2677 in 2019 after my loss myself and my partner went to get tested to see if we are carriers and if it was genetic. I don’t feel like I took much of the information in, but we were both told we are not carriers and it wast genetic. I’m pretty sure it was the 21 one. I think I will get the harmony test just not sure on prices etc. With your second pregnancy did they not pick anything up on your scans etc? I’ve been given a 10 week scan and then will be offered the test where they take cells from the placenta but I’m not keen on doing that again xx

Sorry for your loss OP.

You’ll still get your NHS screening tests. But for more certainty you might consider the harmony test. I’ve just had one it was £450.

If it's not the genetic translocation then that's very positive.

I wasn't keen on the amino or cvs either. Thankfully the NIPT had been given the go ahead here on the nhs instead. It makes sense. It must be cheaper. Privately it is around £400. It's pricey, but for peace of mind it's not too bad.

With my daughter there were no soft markers at all. All measurements and hormone levels were normal. I believe she was meant to be. With this pregnancy I got a scan at 8 weeks by the hospital and then NIPT bloods taken at 10 weeks. It came back clear so they said I should refuse the usual screening at 12 weeks since thats not as sensitive so could come back high and just freak me out when we already know this baby is most probably not affected. So the NT measurement wasn't taken, the other soft markers- nasal bone etc all looked fine. At my 20 week scan they had a little closer look at his heart and asked if my daughter had any heart issues- she doesn't. So they said we won't need an extra consultant heart scan.