Another with DS?

[newmom]

We are thinking of trying to have another little angel and I have done no research on the topic, but does anyone know about the odds of having another with DS? Do your "odds" of having one increase because we already have one? I have really been struggling with this and haven't really looked into it, probably because I am afraid of the answer. Anyway, does anyone know anything about this? Thanks!

[meghans_mom]

HI there & welcome!
Yes, technically your odds increase - not sure of the exact numbers and don't know if it varies with age.

I have to say, Meghan's physical therapist said to me once...that she's worked at Meghan's school for over 20 yrs now - and there are about 300 families a year in the school. She's never in those 20+ years met a family that had a second child w/ DS (except for twins).

If your child has translocation DS (something like only 2% OF all kids w/ DS) rather than the non-disjunction type then your chances are much higher...maybe 50%?
Your child's genetic report should have told you which type DS it is.
I'm sure someone else here can tell you the percentages better than I can.

I will also say our first has DS and we worried a little too but we had a second child when she was 2 and he was perfectly "fine". We're thinking of having a 3rd but I worry more as I get older.
hope this helps some - laurie

[wrblack]

Well, yes. And there is a mom in our local support group who has 2 kids both with regular, non-disjunction trisomy 21. But you might want to review Dr. Leshin's essay on prenatal testing
www.ds-health.com/prenatal.htm
and its Risk table
www.ds-health.com/risk.htm
And check out the link to the essay by Dr. Benke on risk of recurrence, www.nas.com/downsyn/benke.html
which says, in part, <<If a couple has a child with DS, the risk is higher for the next pregnancy (1/100). Obviously, this means that the risk is 99% that the next child will NOT have DS.>>
I think that risk for a second child with Ds is sometimes given as risk for maternal age plus 1 per cent.
Couple of ways of figuring that. For example, prospective mom is age 29, usually risk would be 1 in 1,100. But mom already has a kid with Ds, risk goes to 1 in 100.
Another mom to be is 39, normal risk for that age would already be 1 in 100. Already have a child with Ds, add another 1 per cent, risk doubles to 1 in 50.
Okay, yet another prospective mother is age 43. Risk for age is already 1 in 50, 2 per cent, double the risk would be 1 in 25, adding 1 per cent would be 3 per cent or only 1 in 33. Take you pick, something in that range.
I don't think people just made up these numbers, believe they are generated from statistics of known cases.

[momofrussell]

Well, gee, after Bob's medical mathematical post, you can't get much clearer than that!

We were also told that because we had Russell and he had DS, (basic good old fashion Trisomy 21) our next child had an increased possibility of DS. They gave me the 1/100 statistic. I was 31 when I had Russell and 33 when I had Reece. So I don't think I had any different odds due to my age added to the 1/100 odds. Reece did not have DS nor did I have an amnio or other major tests like I had with Russell. We were ok with Russell and I knew if we could handle one, we could handle two. So there never was any concern one way or another. And our doctor was kind and understanding and didn't push us for something we didn't want.

I agree with Bob, these statistics do come from somewhere and not just made up, but I also think it's kinda like your car insurance rates going up after an accident. If you've done it once, the odds it happens to you again are higher then for someone who has never had it happen to them. So, generally speaking, if you have done something once, the odds are higher for it happening to you again... this goes for lots of things, not just DS and car accidents LOL. But that does NOT mean it WILL happen again!!!! It's all probability.....

I know a mom who has two daughters with Translocation 21 and she is a carrier. So yes, her odds are higher... but she also went on to have a daughter that does not have DS. I have also met a couple moms who DID have two different children w/DS. I never knew if their children had the translocation kind and they never mentioned it, so I assumed it was not the case. But I could be wrong.

I guess you have to ask yourself... are you prepared, even that 1% chance prepared, to have another child w/DS? It's just a small percentage. But for some, it's not a big deal, for others, they don't want to experience it again. So, it's all what you and your husband can handle. Odds are just that, odds. Doesn't mean you will or will not win the lottery. Also, I don't know how old your child is but if you are still dealing with the newness of all that comes with DS, your feelings on a sibling may change with time. So try not to close any doors just yet

Hugs,

A.

A.

[kellyds]

We've been curious about that, too, since I'm 45 and we don't use contraception. I've had 7 miscarriages in the past several years, and the doctor figures a lot of my eggs probably have chromosome damage due to my age. I would think, in my case, with my history of miscarriages and now a baby with DS, our chances would be HUGE.

At least, if it happens again, we'll already have some experience with it. Like I've said before, I'll take another baby with DS before another miscarriage any day.

Here's something I found on the web:

What is the risk of parents of a child with Down syndrome having another child with Down syndrome?
In general, for women under 40 (after having one child with Down syndrome), the chance of having another baby with Down syndrome is 1 percent. The chance for Down syndrome is also known to increase with the mother's age and, after age 40, a mother would simply have the risk based on her age at delivery.

[Jessie]

Hmmm, interesting stuff here. So . . . Bob, could you do the math for me and my DH? LOL

I am 36, no children
He is 39 w/one Ds child

What are the odds we will have a child with Ds . . . 1/100 simply because of my age??? Does the fact he had a Ds child have any bearing on it? Jason is regular old Trisomy 21.


Jessie

[christie]

All I can share is that when Chris was born, the Doc said basically it was like "Pot Luck" and didn't mean I would have another child with DS, although my age was making the risk higher.

Just recently we had Chris evaluated at a DS Clinic and one of the things the Doc, who is suppose to have tons of knowledge on things bout DS told me I should go home and talk with my daughter, as she is 15, that just because her brother had DS, in no way makes her risks of having a child in the future with DS any more then it would any other woman of the same age.

YES there are people that have had more then one child with DS, Car, who BTW, has not posted in way tooooooo looooooong, HINT Car has two beautiful little girls, not twins, and both have DS. Can happen, but doesn't mean it will.

CC ~

[Jessie]

Well, I got the answer to my question regarding whether or not Brian having had a Ds child will increase our chances together of having a child with Ds. The answer is no. All you guys probably knew that, but when you are looking at statistics, it doesn't say, ok your spouse had a child with Ds . . . so your new number is blah blah blah. . . KWIM?!

I met with the Perinatal (high risk) doctor this week and he was wonderful at answering all of my questions. He totally put my mind at ease about everything and even explained why so many tests come back with false information for people and what you really need to look at, etc. Basically, my only "risk" factor is that I am 36, and even then that's not really a big deal.

Of course, I am still going for the super-duper ultrasounds . . . any excuse to hear the baby's heartbeat! So, I will be having the one that looks for the nucal trans. and nasal thingy in a couple of weeks and then another one in June where they look at every organ, etc.

When I told him we didn't want to know the sex of the baby, he said he really puts the pressure on during the ultrasounds . . . he was a very charming doctor! I wish he could be my delivering doctor, but he won't be.

Anyway, that's it for now, I'm feeling great and not experiencing morning sickness yet!

Jessie

[Jessie]

And one other thing the doctor said which I thought was wonderful: "Really, Down syndrome is about the least tragic or severe thing that can happen - there are many more worse things out there than having a child with Down syndrome". He completely breezed over "other options" as if he didn't feel they belonged in the conversation. Gotta love a doc with that attitude!

[wrblack]

Jessie,
Sounds like you've stumbled into a really good perinatologist. That's good, happy for you.
We did Ultra-screen, one of the brand names for that nuchal fold/nasal bone scan combined with some blood work, with Charlie's little brother. It changed our risk for Ds from 1 in 30-something to 1 in 300-something. And led us not to do any invasive, risk-bearing testing.
You might want to check with that good perinatologist about this, but I think Ultra-screen is an improvement in sensitivity of prenatal screening tests but not all that much better in accuracy. That is it does a better job of detecting, picking up on, fetuses with Ds, sensitivity of screen improved to about 93% as compared to about 85% of quad or triple screen or 65% of AFP. But accuracy, false positive rate, still about 3 to 4%, compared to 5 to 7% of other screens. So, I think getting an Ultra-screen report that shows increased risk would be reason to consider further testing but not reason to freak out.
'Course, due to our experiences, I may have a warped perspective on all of this. I just think making babies is really risky business. Our Ultra-screen with Robert, who does not have Ds nor does he have a 22q deletion, didn't tell Lynn that what she should really worry about was severe pre-eclampsia, HELPP syndrome, blood pressure of 220/120, worry about your liver swelling so much it could rupture its capsule and kill you.
Oh, sorry, you probably didn't need any of that just now. Have a happy, healthy, complication-free pregnancy. But do check with your peri about the false positive rate of that early screen, if he hasn't already been over that.
Best wishes,
Bob

[Jessie]

Uh . . . thanks Bob, I think! LOL

He did go over the statistics for all of the tests and when I should and shouldn't worry about what the results say. We are kind of going a step at a time, since I'm not super worried about anything I don't really even want to consider an amnio right now. So, we are doing the ultrasounds possibly along with the blood tests.

Your poor wife! I knew someone that had HELLP syndrome during their pregnancy and it was so awful everything she went through. Thank goodness she was having twins - I don't think she would have risked getting pregnant again after what happened.

You just never know what's going to creep up on you.


Jessie

[hannahph]

Congrats Jessie!!!I just wanted to share our story for what it's worth! I agree with all the stats. I have a six year old daughter with DS and we also have a two year old boy without DS. We wnt to a genetic counselor and he gave us the 1% rate as Hannah has trisomy 21. what I would say about testing is that we decided agianst amnio because I was afraid of miscarrige. But I did have a level 2 ultrasound and a fetal echo cardiogram done. We would not have terminated if our little boy had DS but we wanted to be prepared at the time of birth that our hospital was prepared to handle a higher risk birth. Our daughter almost died at birth due to a heart defect and our hospital is not all that huge. Had our son turned out to have DS I would have delivered at AlbanyMed(NY STATE) because they would have been better prepared handle tougher medical issues. Just something to think about.

[kellyds]

I declined amnio, also, because of the risk of miscarriage (since I've had seven miscarriages already, and since we wouldn't terminate no matter what).

I did have two level two ultrasounds with Joshua, which were NORMAL. I also had eight ultrasounds near the end of my pregnancy (one a week), because my BP was high, and none of those showed anything abnormal.

So, we had no idea until he was born. I'll still have the ultrasounds if I get pregnant again, because sometimes they can pick up things that can be "fixed" before the child is born. But I won't figure it's an accurate predictor of Down syndrome.

We'll just take who we get!