If you have one child with Down syndrome what are the chances of my 2nd baby having the same?

[Mya2021]

Good Morning All,

I wondered if anyone could share some light on my concerns.

In October I had a termination of DS at 16 weeks and devastated. I just wondered what are the chances of my 2nd baby also having the same trisomy 21 / DS again?

If anyone has successfully conceived a baby without DS after first one having it I would love to hear your stories.

Thanks ahead.

I'm in the same position right now. Well I had a MMC and it turned out that the baby had T21. I've had mixed answers to this. Most say because we have no risk factors it was a pure luck thing. I have read online that you are more likely to conceive a T21 baby again but this doesn't seem to be a view shared with medical professionals I've spoken to. I've got an appointment with a genetics counsellor this morning and she's mentioned they could do the NIPT with this pregnancy through the NHS.

Probably no help at all but just wanted to share my story so you want alone.

I’m not sure on the science behind it but one of my colleagues has a son with DS, and two younger siblings that don’t have it

@PutOnAHappyFace

Thank you for your story refreshing to know I'm not in the same boat.

I had the CVS surgery done and after it the letter did state "your at a higher risk in future" but when I spoke to the hospital nurse she said they write this to all that have had a CVS.

Left me quiet confused like I want to start trying again but just so scared what if it's the same outcome. We both don't have history of DS on both sides so this really took us by utter shock. The midwife said it could be age but I'm only 34 in 9 days lol. So not over 35 where she could use that analysis.

Don't even know GP dont answer the phone ever so can't get advice there and we'll the hospital haven't bothered to give me any follow up advice.

@MrsB2019x

Hiya thanks for that, yes I have read where first born and second usually not DS but third could be or second. But this was my first and it was DS which is why I'm so confused and left just in utter confusion. The risk of trying again and going through it again after 1 MC in feb this year and 1 DS positive this year which both led to 2 surgeries. I don't think I could cope again next year.

I'll wait for more stories to shed light it's all helping especially as my hospital and GP couldn't care less.

One of my siblings (out of 9) has Down’s. The younger ones don’t.

I looked into it many years ago and I think there were a few types of T21 - one (which is rare) is genetic and the others aren’t. Don’t quote me though, it’s been a while!

@SearchingForToes

One of my siblings (out of 9) has Down’s. The younger ones don’t.

I looked into it many years ago and I think there were a few types of T21 - one (which is rare) is genetic and the others aren’t. Don’t quote me though, it’s been a while!

This is right - one variant has a genetic element but it is rare. You are more likely to have a downs baby as you get older but it is a random mutation that can happen at any age. My grandmother had a downs baby at 25 followed by 8 children without it, the last born when she was 40.

Ps it’s not like you miraculously become an “older mother” at 35 but at 34 you’re not - the risk increases with age on a spectrum.

You should be able to have genetic counselling which will go into your personal risk.

The genetic type is probably a translocation, this would likely have shown up on the amniocentesis though.

I know a family with 3 kids, 2 have DS.

Sorry just adding another perspective here (again, nothing concrete like many PP!) I used to work at a Downs syndrome charity where people had already had 1 child with DS. I once knew of someone who conceived another child with DS (although terminated that pregnancy). Many families went on to have other healthy children. There is this theory that risk is increased if you have already had a DS pregnancy but I believe the odds would be very much in your favour. All the best for the future xx

As an aside, the initial NF screening my mum had when pregnant with my brother with Down’s came back as low risk. Another sibling (born without T21) came back high risk. Would be interesting to know how much tests have improved much in the last decade.

Have you had genetic testing OP? I lost four pregnancies. Two of those had two different chromosomal issues, one was Down’s syndrome. We had genetic testing and we were completely fine. It was just bad eggs/sperm undoubtedly due to age.

I have a son with Down Syndrome (I was 31, low chance of DS on all the tests) and we were told when we had him it increases your chance to 1 in 100 that you'd have a second child with DS and that genetic counselling is advised. I now also have DD who is nearly 2 and when I asked about a greater risks/counselling (as she was also low chance) was told there's no point as risk factors don't change. I had to push really hard to get extra tests for DD (had an amnio in the end) to confirm she didn't have Down's (not that I would change my son for a second). I now know around 100 families with children with DS and none have had further children with DS, though obviously as a pp said there is always a chance, especially if there is a specific genetic factor. I would definitely push for further tests when the time comes, just to put your mind at ease.

@harrietm1987

Thanks for this yes I was sent a letter stating I'll be higher risk but apparently they send that to all. I do reckon I'll be higher risk and will need to leave it to the odds.

@BertieBotts

I haven't been recommended anything and they haven't sent me any letters / or called me suggesting any kind of genetic consulting. I had to ring the hospital myself to find out if I will have any further tests now my surgery is over and she said no.

@Hopefulbride18

Thank you so much very kind I do pray so too.

@justanotherneighinparadise

Haven't had any further tests just the CVS & actual surgery and that's all. No letter suggesting or recommending anything.

They said to me it happens and can be a 1 off although I got pregnant in feb and had a MMC and then pregnant again in June found out baby had DS and had to have surgery at 16 weeks to terminate.

I would of thought they would of sent me for further testing but she said you have to have had it reoccurring in order to have any kind of tests done.

Friend of mine has two daughters
Eldest has downs youngest doesn’t

I was offered the test as I’d had three miscarriages in a row. We were referred to a recurrent miscarriage clinic through the NHS.

Hi @Mya2021 did they tell you what type of Down's syndrome it was? If it's the full trisomy 21 or mosaic then it's not genetic, but there's a slightly higher risk. If it's translocation then it is genetic and the risk is a bit higher I'm afraid. It's rarer though.

So my daughter is 6. She is absolutely wonderful and just so happens to have trisomy 21. I saw a genetic counsellor after she was born and they took information and sent it away to a "lab" to work out my chances next time. No idea what they use but it came back at 28 I had around a 1 in 230 chance of another baby with Down's syndrome and around 1 in 550 of Edwards and pataus. Which is quite a bit higher than normal.

A couple of years later I saw another genetic counsellor in another healthboard as I wanted to get a copy of my daughters karyogram (I have it framed on my wall) and she said my chance was basically the same as any woman my age. So even the genetic counsellors don't seem to know what they're talking about.

I'm now 16 weeks pregnant with my second and I was offered additional testing on the NHS. Six years ago they said I'd be offered CVS or amnio but they have made the NIPT available in Scotland now for women who have a "higher chance" of having a baby with a genetic abnormality so I got that. All clear. I know quite a few people who have had a baby with Down's syndrome and then have had another without.

If you haven't had an appointment with a genetic counsellor ask your GP to refer you. It's good to know your options in your area. Sometimes we have to fight for things that we are legally entitled to. I had a letter from mine saying I should call them as soon as I got pregnant again so tests could be booked in. You don't want any extra delays. I was a bit stressed about it all and wanted to know as soon as I could.

@singleandttc

Hiya thanks for the detailed information it's really helped me understand this a bit better.

On my letter it just states " chromosome 21 consistent with Trisomy 21 DS - chromosome 18 consistent with a normal chromosome - Chromosome 13 consistent with a normal complement." On another letter it states "primary nondisjunctional trisomy 21 confirmed". So confused so what it actually was as this is the only letters I got back from the CVS results.

Am I right in thinking it's just Trisomy 21 then ?

@Mya2021 yes, I'm sure that just means full trisomy 21. It's the most common.

It was my daughters paediatrician that referred me to the genetic counsellor. Otherwise I'd never have thought I needed it. It was really helpful - though take their figures with a pinch of salt. I got the NIPT results back at 11 weeks so it was great to get the early reassurance.

@singleandttc

That puts my mind at rest at least still always will be worried but I guess that's just reality. I have decided to try again next year and remain positive and hopeful for a better outcome. It's sad the internet has nothing about TTC again after 2 surgeries. Don't even know how long it takes the body to heal in order to try again. My hospital nurse said usually after 2 periods should be fine but she still said give it time. So I'm thinking next year now and then once I get pregnant to request the tests done as early as possible.

Really big hugs for sharing all this information with me and everyone that did reach out. Amazing to know when you don't have your GP help or anyone from the hospital you have Mumsnet.