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Having more after a DS child


 
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Will
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PostPosted: May 10 2009, 1:34 PM    Post subject:
Having more after a DS child
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I know there's another thread on this, but I wanted to open my own, because the situations (of course) are different.

We have our DS 8-month-old; he's our first baby. They tell us the likelihood of DS for the next baby increases: for a woman my wife's age it's 1 in 600, except if she's already had a DS baby, it's slightly under 1 in 100.

In a way that seems like good odds, but I don't know how I could live with it if we had another DS baby (biological) after knowing this. Partly guilt (we know the risk but take it anyway) and partly the disappointment (we love our baby boy, but we'd like our children to be healthy as possible!).

So we talked a little about adoption. I'm 45, but she's 34; not sure what that implies for the prospect of adoption. I don't want to go thru the process, and I'm afraid we'd be turned down for my age, but it more or less boils down to this:

Probabilities still look good for next baby being OK; but

The cost of that low-probability event (another DS baby) can't be ignored.

My wife's as uncertain as I am.

So my question is this:

Did anybody here have more (biological) children after a DS baby?

Did anybody decide to adopt to avoid the prospect (as opposed to adopting a DS baby -- a loving option to be sure)?

Any thoughts?
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Courtney
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PostPosted: May 10 2009, 4:18 PM    Post subject:
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For about two days after Lucy was diagnosed, we swore we would not have anymore children. I think we were over that by the time we got home from the hospital with her!

We always knew that we wanted two children, so once the initial shock wore off, we decided to follow that plan. We did not undergo any genetic testing and we refused any invasive testing during my pregnancy. We were not afraid of Ds. We had two fetal echos, because I was afraid of cardiac issues and we would have selected the hospital to deliver in based on the outcomes of those echos. Blessedly, Brodie has a healthy heart. He does not have Down syndrome.

I was 34, also, when Brodie was conceived.

Good luck. It's a very personal decision, and I hope you find the answer that's right for you!

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adriennelynne
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PostPosted: May 10 2009, 4:47 PM    Post subject:
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You bring up a question I am sure we all ask ourselves. I am a young mom, 26 (conceived and had Bentley at 25), but as you said, my risks are 1/100 until I get older and then it's the higher risk with age.
So I will put it out there first- I am pregnant! Bentley is 9 months old and I have no idea how far along I am because we just found out and my cycle has been all out of wack because of breastfeeding.
I won't be disappointed if number 2 has DS. In fact, I just asked my husband if we would have tried if I had a 12% chance and he said yes. Smile
Bentley is created in the image of God just like I am. He has a purpose and a plan for my son just like he will for all of our children. Bentley has special things to offer to our messed up world. I think people think too much about having children who are smart, athletic, musical, etc... I think children with DS help us to slow down and evaluate our priorities. What is important to us? What is of value to us? The world says that children with disabilities are not as valuable as typical and high functioning people because they have to depend on others so much- the world values independence. And those are good things, but they aren't the most important. I am not disappointed that Bentley may not marry and leave our home.... that is something that is valuable and important, but it isn't everything.
In terms of the medical issues- it's hard to address because Bentley hasn't had the same medical issues as other DS children I know. So I don't feel like I can add much to that because I haven't been down the same path. I still will say I would do the same thing.
And it is important to remember that 1/100 is a really low risk.

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Courtney
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PostPosted: May 10 2009, 8:45 PM    Post subject:
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Oh, Will, I hate to interrupt your thread, but I had to just say, CONGRATULATIONS to AdrienneLynne! Smile

OK...serious topic...please resume. Wink

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EAS1971
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PostPosted: May 10 2009, 9:00 PM    Post subject:
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Adrienne, CONGRATULATIONS!!!!!!!! How exciting.

Will, this is a topic that has been discussed over and over and over and over on here and all the other DS boards. LOL. It's obviously something many of us think about.

We all think about it. And we all (okay, a HUGE majority of us) decide to have more children!!! Smile

Like Courtney said, it's a very personal decision. But a lot of us decide we're okay with the odds. In fact, many of us really don't worry about DS with future children. Speaking personally, I wasn't worried about DS. But I did suddenly find myself worrying about ALL the other stuff that's out there. Stuff I always knew about, but never really thought about. But after the DS diagnosis, I became so keenly aware of all that can happen. It's scary, to be sure. But there are not guarantees in life. There are no guarantees in life whether you've had a previous child with DS or not! Even if you have a "typical" child, there are NO guarantees about what the future holds for that child!!

It's a leap of faith. Simple as that. But if you want more biological children, my vote is go for it. If you're just not sure, well there's nothing wrong with that. Again, this is a personal decision. Only YOU know how you feel. Your baby is still quite young. Your wife is still young. You've got time to think.

A huge majority of us go on to have more children. A huge majority of those children are perfectly healthy and "typical."

And the odds...they're just numbers. When it comes down to it, those numbers do not mean a thing. They are not any kind of predictor. But even if you put stock in thos numbers....1) a 99% chance your baby will not have DS is pretty overwhelming odds!!!!! and 2) many geneticists now say that 1 in 100 chance following a baby with DS is probably not at all accurate and the odds probably don't really increase following a baby with DS.

My vote, take your time. Talk about it. Think about it. Practice. Wink And if you decide to go for it, you're in good company and I have no reason to think you won't have a great outcome. If you are uncomfortable about trying, adoption is a wonderful idea. Best of luck to you!!!! Smile

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ctvwarren
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PostPosted: May 11 2009, 5:35 AM    Post subject:
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Hi,

I was 23 when I had Zae.... and yes we were scared for a long time that if we had another child that they would have DS.....

We love Zae and would not trade the world for him...... however we did not want the health issues that another DS baby would require....

We waited 4 1/2 years to try again....

Zae turned 5 a few months after we had Lexi *typical child*

I also had two fetal heart echos *just to make sure*

I also had the blood work at 18 wks to see if she had DS.... not because we would have done anything.... just a forewarning...

GOOD LUCK!


And to my knowledge I believe out of all the members here there are only 2? that I have read had another child with ds....

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naomid
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PostPosted: May 11 2009, 5:57 AM    Post subject:
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Callum was our first baby (born when I was 31) and we knew we wanted more than 1 child and wanted them to be close together in age. We did discuss the odds but didn't ever think about adoption. We did decide to do testing and I had a CVS test done when I became pregnant with Kieran. We decided on the testing as we're both worriers and I didn't want to be told in the delivery room if anything was wrong (we got a diagnosis with Callum at birth after all non invasive testing during the pregnancy was normal).

I didn't have any hesitations in having more children, whenever you get pregnant you take a risk on what your child will be like. Has your child got plain old nondisjunction Trisomy 21? if he has then the it's not inherited. Your wife is still pretty young, so go for it.

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Meredith82
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PostPosted: May 11 2009, 3:23 PM    Post subject:
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I'm expecting #3 (biological) and although we think it would be quite God's sense of humor to give us another child with Ds (we adopted 2 also so we have 3 w/ Ds), it does not appear that this baby has Ds. I'm 23 weeks not and had my diagnostic high risk echo today and all looks pretty good on every measurement they look for (that they could actually SEE, bc of the baby's positioning).

I think if you would really be devastated by a second child w/ ds, then no, I wouldn't have another bio child.. just because there IS that risk (tho it's there for EVERYONE...). But if in time you decide that the chance is REALLY small, and really, for it to happen twice is SO UNUSUAL.. well, go for it!!

Just my two cents Wink

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burnsun
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PostPosted: May 11 2009, 3:35 PM    Post subject:
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You problem with adoption will likely not be your age...... or hers....it may be the fact you will be presented as a family unit and not all bm will want their child to become the sibling of a child with disabilities,

(trying to put it as nicely as I can)

However others may find that an appealing feature since you have accepted your other "non perfect child. Birth mother and adoption is a finisky and scarey process.

I speak from experience. I HONESTLY LIKE adopting, it is easier for me in many ways..... but their is so muchless controll.....

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Will
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PostPosted: August 24 2010, 11:45 PM    Post subject:
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In case anyone finds this thread... Liam's little brother Charles came in March. He is fine! and a very ambitious baby. So glad we did!
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LiamsMom
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PostPosted: August 25 2010, 12:20 AM    Post subject:
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Congratulations! Your little Liam looks a lot like my second son who is also named liam. I wish i could post a picture so you could see. I have heard from many other parents about the benefits of having a younger sibbling of a child with DS.

Take care.

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PostPosted: August 25 2010, 8:36 AM    Post subject:
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Our son with DS is our second son. Even with the higher odds, we went ahead and had a third. He is a boy. And he does not have DS. He is five months old today, and he is just the most wonderful, perfect baby. Benjamin is very curious about him, sometimes jealous, but I really am SO glad we had another b/c now B will have two brothers, one on either side of him, to learn from and to love.
We did not have an amnio w/B, and we were blindsided at birth. While I am personally glad that it worked out that way for us, with Thomas, we had the amnio as soon as we could. I am very glad we did.
Good luck w your decision. I hope you find peace with whatever you choose!

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maggiebeth25
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PostPosted: August 25 2010, 1:48 PM    Post subject:
Re: Having more after a DS child
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I asked this question awhile ago....here are some of the responses I got.
http://www.downsyn.com/phpbb2/viewtopic.php?t=43624&highlight=

my husband and I, even with all that rachel and I went through, are going to have another child. Smile

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TheBradyBunch
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PostPosted: August 25 2010, 1:52 PM    Post subject:
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I'm not sure why they give higher odds unless it's translocation. My dr told me the chances of me having another baby with ds are the same as they were before (1 in 1500+). Noah has standard t-21. Anyway, I had two more children after him, none of my other children has ds.

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PostPosted: August 25 2010, 2:18 PM    Post subject:
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From everything I have always heard from doctors and read in books, even if your child has T-21, after you have a child w/DS, your odds for another one automatically go to 1 in 100. It doesn't make sense to me or my husband, but that's what I've always heard/read.

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maggiebeth25
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PostPosted: August 25 2010, 3:38 PM    Post subject:
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MommyAngela wrote:
From everything I have always heard from doctors and read in books, even if your child has T-21, after you have a child w/DS, your odds for another one automatically go to 1 in 100. It doesn't make sense to me or my husband, but that's what I've always heard/read.


our geneticist told us that our odds would be based on my age plus an additional 1% since rachel's Ds is not hereditary.

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PostPosted: August 25 2010, 10:14 PM    Post subject:
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numbers are numbers.. i think. Only God knows, I say

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PostPosted: August 26 2010, 3:20 PM    Post subject:
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I always try to respond to these particular posts. I have had two more healthy babies after Tiana our first was born with DS. Tiana's world has been wonderful having a little brother who adores her and a sister now who will surely be a good friend. I even plan to have another in a couple of years even though I will be 37. I will not let fear have this big of a place in my life. I always tell people to really continue. I read something from Dr. Sears recently about it. The Sr. Dr. Sears advocates women to continue becasue the statistics are really in there favor. (They had a son born with DS)

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~Ben'smum~
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PostPosted: August 26 2010, 4:07 PM    Post subject:
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Will wrote:
In case anyone finds this thread... Liam's little brother Charles came in March. He is fine! and a very ambitious baby. So glad we did!


Congratulations! I'm glad you took the gamble and it paid off! Very Happy To answer your original post, I'll be going on to have more kids hopefully. Ben's is regular T21, so it was a fluke.

MommyAngela wrote:
From everything I have always heard from doctors and read in books, even if your child has T-21, after you have a child w/DS, your odds for another one automatically go to 1 in 100. It doesn't make sense to me or my husband, but that's what I've always heard/read.


Its funny how things differ from across the Atlantic, I was told by our genetist, that based on my age and Ben's DS being the regular T21 that my odd's were 1 in 901.

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MommyAngela
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PostPosted: August 26 2010, 4:28 PM    Post subject:
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That is interesting! This is from the March of Dimes website:

What is the risk that parents of a child with Down syndrome will have another affected child?

In general, in each subsequent pregnancy the chance of having another baby with Down syndrome is about 1 in 100 up to age 40. After age 40, the risk is based on the motherís age (Cool. If, however, the first child has translocation Down syndrome, the chance of having another child with Down syndrome may be greatly increased.

Link: http://www.marchofdimes.com/pnhec/4439_1214.asp

It's also stated that way in the book we read shortly after we had Benjamin, Babies With Down Syndrome
http://www.amazon.com/Babies-Down-Syndrome-Special-Needs-Collection/dp/0933149646

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PostPosted: August 26 2010, 6:21 PM    Post subject:
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I did a bit of research and what I've been able to find out is that it's usually the fault of the mothers egg. In some cases it's the sperm and in other cases it's just a mutation at conception. (this is T-21 I'm talking about)

Most healthy women (with no fertility or carrying problems) will dispell an unhealthy fetus (miscarriage), and as we get older the reason the numbers go up is because our bodies are less able to recognize an "unhealthy" fetus.

I'm thinking the theory is, if we conceive and carry a child with Down Syndrome, the idea is that (assuming the same two people are conceiving)

A: at least one sperm or egg had the deformity which means there are probably more

and

B: moms uterus didn't recognise the unhealthy fetus therefore increasing our chances of another child with DS.

I think though, if you took all the families with children who have down syndrome (who's parents are not over 35) chances are there wouldn't be 1 in 100 that conceived two children with down syndrome.

Also the chances of the sperm having the extra chromosome apparently increase with the fathers age.

In my case, I was 24 when Noah was born, and his father was 36 (23 & 35 at conception). My 3rd child was also only 3 months old when he was conceived, so my uterus wasn't exactly in it's optimal state.

We will never know what actually caused it, but it really doesn't matter. He's here now, he's part of our family, and he certainly would never be a reason not to have anymore children.

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PostPosted: August 26 2010, 9:32 PM    Post subject:
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Well, we decided to adopt to ensure the prospect, so we may not be what you're looking for.

We hadn't intended to adopt again, nor had we considered having two children with Down syndrome.

But I have to say, we haven't looked back. We were so much more confident with our second child and had already made the relationships with doctors and specialists to smoothly integrate him into our family and schedules.

We also really like the idea of LC having a sibling who experiences the world she experiences and faces the world from the perspective that she does. We'll go on to try and conceive children of our own, but feel very blessed to have been able to give our children a sibling who is similar to them and can support them in their experiences growing up as an individual with Down syndrome.

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PostPosted: August 27 2010, 8:11 AM    Post subject:
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Congratulations Will! I think it is going to be wonderful for Liam to have a sibling. And it is going to be really wonderful for Liam's brother to grow up with a sibling with Ds. I know that my daughter would not be the incredibly wonderful person that she is if she did not have a brother with Ds. (She would only be wonderful, not incredibly wonderful. Wink )

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