Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

SN children

Here are some suggested organisations that offer expert advice on special needs.

Flip

Original poster

What are the chances of downs striking again?

13 replies

Debsbabe · 24/08/2004 19:14

I know i am a little premature in thinking about this and am not sure what i am going to do yet in the future but i was wondering if anyone you know what the chances of having another baby with Downs syndrome if we did decide to have another baby in the future?

I have always dreamt of having a fairly large family and am not getting any younger then the risks do increase dont they? It is just after Scott's fathers remarks about not having another one because we dont know what would happen if we do. Have really got to me and made me more determined to find our what the odds are and to find out if there are any tests they can do to see if it is one of us that have caused the disabilty?

Sorry i am waffling

Love Debbie and Cameron 12 days old and still taking the 3 ozs xxxx

OP posts:

aloha · 24/08/2004 19:31

It's usually, as I understand it from writing about this subject, just a spontaneous thing that can arise in absolutely anyone. Because your first two didn't have Downs I doubt there is any genetic component, which is pretty rare anyway, but the people to talk to you are your doctors. Otherwise the only way to be 'sure' is to have CVS testing from about 12 weeks and a termination if you get a positive result, which may or may not be what you want. The non-invasive tests, such as the nuchal fold are 80% accurate, but in that case too, the only 'solution' is termination. Do talk to your consultant on this one. As far as I know you are still very young - only 31, is that right?

aloha · 24/08/2004 19:43

Just looked over my notes. The chance of having another child with Downs after a first is reckoned to be about 1% or one in a hundred. There is a rare kind of Downs Syndrome caused by a genetic glitch in one of the parents called Translocation. This is the cause of only 3-4% of cases of Downs, and of that tiny percentage about 1/3 of those are caused by a kind of translocation in the parents children with Downs have this type. If that is your child (about 1% of children with Downs) then you are reckoned to have a 12% chance of having another child with Downs. But the only way to find out if you fall into that category is to talk to your consultant. I hope that makes sense!

motherinferior · 24/08/2004 19:49

I used to run the press office at Mencap. I came across one family with two Downs babies but as far as I remember it really was the only family. As Aloha says, it's a chromosomal 'accident' in virtually all cases.

Please don't worry too much about it at this stage, because you have so much else to focus on. Hugs.

Dingle · 24/08/2004 19:52

Debs,I have a small booklet from DSA,Genetics of Down's syndrome-a guide for parents & other carers.I believe you can get it free as a parent member, (membership is also free in the first year.)
At some stage you should be asked about Genetic Counselling- I can't remember by who!
Glad to here your little man is keeping up the good work.

Dingle · 24/08/2004 19:55

Yes, I agree MI, too soon to be worrying about this- to be honest I haven't even read my little book and dd is 2.9.

tamum · 24/08/2004 20:07

It's a really easy test to see if you are a translocation carrier. The chances are tiny as you've been told, but it's something that can be checked once and for all if it would put your mind at rest

Jimjams · 24/08/2004 20:12

When they did Cameron's test they would probably have seen if he had a translocation (depends a bit how they did it). To be absolutely sure ask for a test for you and dh. Unlikley to be a translocation though in which case it's just pure chance.

geekgrrl · 24/08/2004 20:39

debbie, they would have told you if Cameron had a translocation because it's obviously important. Other than that, the usual figure that's quoted is that your chance is 1:100 until the ordinary chance is even lower than 1% due to age, at which point you have the same chance of it happening as everybody else your age. (does this make sense?)
It's just one of those things really! A glitch.
Of course even if the chance was 1:2000 there will always be that one person. I was 24 when my daughter was born, and on a bulletin board I frequent are two mums who were 17 and 18 when they had babies with DS.
When I was pregnant with my youngest child I had a nuchal fold & nasal bone scan which was all fine and decreased my chance to 1:300 (I was 27). I still went ahead with CVS but of course that is such a personal decision.

lou33 · 24/08/2004 21:34

My sister had tests done after her first child was born with ds when she was 27, and they said it was not a genetic thing with her, but a "one off". That was 15 years ago, so I am sure they have far better testing methods now.

She had 3 children after her son, who did not have DS.

eidsvold · 24/08/2004 22:39

from all of my reading unless it is the translocation type your risk is 1 in 100 regardless of age. As MI said - it is very rare to find a family with 2 children with DS - I have not come across any in the parent groups I am a member of nor in any of the reading I have done.

Our second babe is due Nov and we really aren't bothered by the fact that this one could also have a 1 % chance of having DS - I did not have a CVS nor an amnio - for personal reasons..... and all looked okay on my 20 week scan. I was 33 when dd was born and will be 36 when this one is born. We are not sure whether we will have a third... only time will tell on that one. ( we are getting on a bit ) We have had people express surprise that we have gone on and had another child after dd was born with ds and with her heart defect but generally people are very pleased for us.

You will be offered genetic counselling at some stage - we were offered it a couple of days after dd was born - not a good time - and we refused.... and so we have not had genetic counselling.

In Cameron's notes will be the results of the karotype test which confirms the type of Down syndrome that he has..... I know dd's does. Then take it from there....

Please don't let worries like this cloud your enjoyment of Cameron - I know it is easy for me to say but just enjoy him and being his parents.....

geekgrrl · 25/08/2004 07:23

woops, I meant 'unless the chance for ordinary people is HIGHER than 1%' - sorry about that. As if it wasn't confusing enough.

Davros · 26/08/2004 16:29

Eidsvold, it really annoys me when people are "surprised" (hoe rude) that you're having another with the first having DS (or whatever). No matter how much we love our SN children don't they think we'd also like the chance to just be "parents" like they've had? Also, its only going to be good for the first child isn't it and the whole family? Sorry, one of my hobby horses :)

Thomcat · 26/08/2004 17:10

BTW - just as a note re Edisvolds post - Lottie is translocation DS but neither Dom or I are carriers of the extra chromosome so she is a fluke translocation! Just thought I shuld point that out. We were told she was translocation straight away and urged to go for genetic testing straight away but we waited for a year until we went.

Flip