Pregnancy after Down syndrome baby

[Worried4566]

Evening all,

Firstly I have already spoken with the hospital/consultants/midwives etc. and been given more information to go through than I know what to do with!

I’m only early in my second pregnancy (around 6 weeks). Our first pregnancy we sadly miscarried around 18 weeks, we found out after a little girl with DS. It totally devastated us when we lost her. It was trisomy 21, and the consultants told us afterwards that it was one of those things, and could have happened to anyone (as in not genetic from either of us). I’m 32yo.

However please can anyone with experience of having a first baby with DS let me know about your second if you went on to have more, from what I’ve read online it does seem to suggest our chances are higher of having a second baby with DS, and I’m also fully aware that babies without DS can miscarry for no reason. I’m just very worried and hormonal at the moment.

Thank you x

I'm sorry you went through this OP for for your loss . Did the hospital give you and your OH/DH karyotyping blood tests afterwards- to check the cause wasn't a translocation?

My 1st pregnancy (4yrs TTC at that stage) had Patau syndrome, found at 12 weeks. Afterwards, DH and I had blood tests and were also told by the genetic counsellor that it was just a random event. I too read up online that a reoccurrence would be 1%, but other sites said it would be more. Its hard to know what you read online. There is also mosaism which is yet another rarity.

I'm afraid I can't advise about future children, because I went on to MC twice. 1 of which was definitely not the same trisomy.

My good friend abroad had a baby with DS, but nothing was picked up prior to birth. She already had 1 child beforehand, and another afterwards- both unaffected. During the 3rd pregnancy, she was give additional scans and I think an early NIPT. Have you been offered more scans or anything additional OP? Just remember that you aren't alone and this isn't your fault. x

Thank you for your reply @CJ0374. Yes sorry I meant to say that. We were both checked afterwards re translocation.

I am so sorry to hear of your sad losses also. I think it’s tougher to swallow when there isn’t an answer and the experts cannot tell you why.

Thats helpful thank you, I’ve been offered the NIPT but no mention of extra scans so I will mention if there are extra available at my next appointment.

Thank you for your lovely, kind words. Sending a hug to you as well. You’ve been through an incredibly tough time 💐 x

Hi there

I am in a similar sort of position, had a TFMR for T18 at 14 weeks for our first baby at the age of 38. A 8mm NT was picked up at the 12 week scan and it all unravelled from there. I had a NIPT after that and it came back high risk for T18, baby was clearly very unwell so we didn't go ahead with the CVS as it was only delaying the inevitable.

I'm now 10 weeks pregnant again. I've been offered a reassurance scan at 7 weeks, a scan and NIPT at 10 weeks (tomorrow) and then I can still have a CVS or amnio if I want to. Also an extra scan at 16 weeks if I'd like it. I'm undecided on the CVS, going to see how I feel once I have the NIPT results and the 12 week scan.

I am very anxious that this time it will be T21, purely down to age. We don't have any genetic disposition.

Sending hugs, it's an anxious time but I'm trying to remember we were very unlucky last time and hopefully it will all be ok x

Hi @MrsScotland sorry to hear you’ve been through this also, and sorry for your loss.

I didn’t realise they would offer Amnio or CVS regardless of NIPT result. I was hoping that they wouldn’t (in a strange way) so it was out of my hands. I don’t know whether the NIPT will be enough to satisfy me, I think as you say, take it when it comes and decide at that time.

Yes, I agree. The Drs have said it would be rare to happen twice, but it’s definitely not unheard of. Also when it’s happened once, it’s natural to think the worst again. Sending hugs to you too x

Unfortunately I think it very much depends on your NHS Trust, I’ve seen other people on here say they weren’t allowed a CVS or amnio after a clear NIPT which I think is really unfair when they’ve been through a TFMR.

Just make sure you find out your area’s policy x

Hey @Worried4566 Congrats on your new pregnancy! I can totally relate to everything you're feeling. I lost my first baby at 14 weeks via tfmr after a Downs Syndrome diagnosis last year.

I was also 32, and like you, no genetic history of the condition. The 'odds' increase by 1% in your next pregnancy but that's just so you get additional testing and your screening results are more closely monitored. The chance of this baby having T21 are the same as before - i.e. very very low! You were just extremely unlucky the first time.

I'm also pregnant again and I had a NIPT (harmony) test at 10 weeks and the results came back less than 1:10,000 chance (the lowest it can be!) so this really did reassure me.

Each step is scary but time does pass. I had my 20 week scan yesterday :) Just try to keep remembering that the odds of having a healthy baby are soo much higher than any other outcome. I know its hard to keep positive or even feel like you're 'getting your hopes up' but it really does help.

Best of luck over the next few weeks - hopefully you'll also get a reassurance scan? I has one at 7 weeks arranged via the screening team. Happy to chat any time x

Hi again Thornberry! Great to see you had a good 20 week scan. I need to find our longstanding TTC after TFMR thread, @Worried4566 you might like to join us on there, we pop back on and update every so often

Hi @Thornberry1 thank you for sharing, sorry for your loss. Gosh both of us same age too.

Thank you, you have made me feel better about things. Yes reassurance scan is booked… I think I’m more worried about the NIPT. Hospital have confirmed they will offer amnio regardless of result but I don’t think I want one. So glad to hear you had your 20 week scan yesterday! And that you are feeling reassured, this does give me hope 😊 x

@MrsScotland ah that’s great thank you x

I had a baby with Down syndrome (diagnosed at birth) and was told the chances of subsequent pregnancies increased the risk to 1 in 100. Had another pregnancy about 6 years later and the midwives and doctors were not at all concerned. Tests came back low risk (as they had with my son with DS) so I insisted on an amnio, which midwives were fine with. DD didn't have Down syndrome but I was frustrated at how blasé everyone was.
Congratulations on your pregnancy, if you're at all concerned make sure you have the tests as early as possible so you can make an informed decision.

@Worried4566 I was the same! I was so nervous to get the NIPT results phone call, but it's just the biggest relief when you get good results. You can see how you feel then re. amino but I just didn't feel the need, especially with the 12-week scan and screening just around the corner from then.

Just hold tight, you got this! x

Thank you @The4Seasons for sharing. Yes I’m booked for the nipt x

@Thornberry1 thank you! x

Good luck and hope it goes well.

I had different experience - I had ivf and mmc first at 9weeks - no idea if DS or not . I had a second mmc at 13 weeks with twins - tests advised that one was a baby boy with DS.

I was told after the second loss that my chances increased for DS due to having been pregnant with a DS baby and also age related - I was mid 30s +. I had genetic tests and was told we weren't carriers for anything .

I went on to have a third ivf pregnancy - again twins - mmc at 16 weeks - tests showed no DS and just "bad luck".

I can understand how worrying it must be , I hope your scans give you the reassurance you need and all is well .

Thank you @BeaLola

Im so sorry to hear you’ve had such a tough time. Thank you for sharing. Sending you a big hug 💐

Hi @Worried4566,
do you have any update on how things have gone?

we lost our baby due to trisomy 21 at 15+3 (TFMR).

we’re desperate to try again asap (I don’t think we will even wait for my first period) but I am petrified it’ll happen again xx

i lost my next baby in early pregnancy after my child with Down syndrome was born then went on to have another child who doesn’t have it. None of my friends with children with downs have gone on to have a second child with it