Down Syndrome - what would you do?

[Ash]

If you had the blood work done for genetic disorders and a high likelihood of Down Syndrome was indicated, what would you do?

 

There are further tests that can be done to make the determination more accurate. Would you want to know the results, or just see what happens while making partial preparation for a special needs baby?

 

The chances of Down Syndrome rises quite dramatically as women age. I'm surprised at how high it is for a woman in her 50's. Those women thinking of delaying having kids until later in life may want to address those numbers before they make a final decision.

 

A special needs child certainly take a lot more resources to care for, and combine that with a situation in which the parents are older to begin with and it starts to become worrisome. Parents having a child at 50 will could conceivably still be intimately involved with their child's care when they retire and their energy levels and ambition are starting to decline slightly, certainly in terms of child rearing. Heck, I'm only 43 now and sometimes it can be a real struggle to get through a normal day with the kids, particularly the toddler.

 

I'm just wondering, there are a range of people on here, how would you really see this sort of thing working long term? If you feel your comments are not mainstream (and I encourage those as all others) then please feel totally free to PM.

[Iceman26]

I would want to know the results, and if the baby were to have down syndrome then I would want to terminate the pregnancy.

[DragonGirl724]

I would want to know. If I wasn't already pregnant I would choose to adopt. There are so many children in need of a loving home and family to care for them...and the problem with the gov't and children w/ DS here in the states is that I was told due to the amount of aid the govv't provides to families with DS children techically the gov't owns your kid and you may have to fight to keep him/her from going into a home. I could be off on this information, and if I am someone please tell me, but I had a friend who's brother had DS and his mom had to fight LONG & HARD to keep him. Even though he was functioning and had a job, he still was technically owned by 'the gov't'...but then again you're from Canada...

 

But like I said I would chose to adopt and get further testing and I am pro-choice so that is my stance...I am in no position to say whether or not I'd terminate the pregnancy because I am not directly in that situation, I'm sure a lot of people can say what they'd do right away but once in the position there is a lot of emotional attachment and that makes the decision that much more difficult. I suggest having a counseling session with a Doctor to discuss things further....

 

(this is why we need Stem Cell research)

 

-DG724

[Jayar]

I personally don't feel that there's any morally justifiable reason for knowingly bringing a "special needs" baby into this world. Life is hard enough for a person who isn't "special needs". I'd definitely terminate such a pregnancy, thereforeeee I'd want to know in advance.

[fnlyfrei]

I know people with downs kids...the government does NOT own them. That sounds like nazi germany.

[needopinions]

While I would want to know before hand, if possible....I would ABSOLUTELY have a baby with downs.

 

When my friend was pregnant she was online doing all the researching and chat rooms for pregnant women and everything like that...and something a lady said in there made absolute sense...she said that she used to go to bed every night and pray for a healthy baby and when her baby was born it was discovered that he had down syndrome...at first she was devastated but later realized...she DOES have a healthy baby...people with downs are different than you and I sure...but they are not unhealthy and they are certainly not incompetent.

 

PS Downs babies are said to be the happiest babies.

[Aurian]

I would want to know of any possible issues and decide from there. Being deaf, there is a chance I would have deaf children (I am the only one in the family that is deaf, so the gene is very recessive, but there is still a chance).

 

I can accept some handicaps, deafness, blindness, etc. However, I have a harder time accepting handicaps that affect a child`s mental state, including Down`s syndrome. I have no idea how I could raise a child with that, especially since I find those with Downs impossible to lip-read. I wouldn`t even be able to understand my own child! I also wonder how good the quality of life would be to be honest...

 

If I suddenly decided I wanted children and I was "too old" to have a good chance of healthy children, then I would also look at the adoption route. Why bring disabled children into the world when there are healthy children who would thrive with a proper family?

[DragonGirl724]

other people's opinions on a forum:

 

link removed

[BellaDonna]

I had the AFP bloodtest done which is supposed to assess risk for Down's Syndrome, Trisomy 18, and neural tube defects.

 

However this test is not very accurate (only about 80%)- because often gives out FALSE positives which are disconfirmed once amniocentesis is done. It can create a lot of stress and false alarms for a couple.

 

My husband and I had decided that if the AFP test came out positive for an "increased risk", we would take the next step and have amnio to find out more detail. Luckily my test came out negative so I did not have to face the next decision- whether or not to have more testing. It was a relief.

 

I think confirming "positive" results is important if a couple wants to terminate, but it is also very important even if they decide to have the baby because you are now armed with information to be sure that the proper neonatal specialists are present right at birth to care for your child if he/she has a severe disability. The child's chance of survival increases with the right medical personnel on hand immediately.

 

Here's a link to a similar topic that came up on enotalone:

 

I think there are major flaws in the current system of prenatal testing. The CVS test can be done very early on- but has a significant risk for causing a miscarriage. The AFP bloodtest is not very accurate and by the time you get the results you are past the first trimester (for some couples it would make terminating much more difficult). The bonus to the AFP test is that it is not invasive- and carries no risk -it's a simple bloodtest. Amnio can't be done until the second trimester as well- and in most cases by then you've even had fetal movements- personally I could not terminate that far along. Amnio also carries a slight risk of miscarriage. But it is rare.

 

Ultrasound methods like nuchal translucancy and detailed ultrasounds to look for "soft markers" for disabilities are also limited.

 

All in all- it's just very stressful- there are a lot of decisions to be made- and sometimes tests can be wrong or cause risks of miscarriage to otherwise healthy pregnancies. There are no guarentees either way.

 

Amnio seems to be the most accurate and reliable prenatal test- however it's done so far along I would personally not be able to terminate myself at that point. I think it's a very personal decision for each couple though.

 

 

The whole prenatal testing system makes my head spin, actually.....

 

I wish science would advance in this area!

 

 

BellaDonna

[shikashika]

I think the choice is up to the individual or couple.

 

Depends on the genetic condition. I have a genetic condition, that only affects 1 in 5000 people. 50% of people get this from a parent, 50% just get it as a mutant ( I like that.. I'm a mutant ... ha ha!)

 

Anyway, on a scale of 1-10, 10 being the most severe, I'm only a 2. However, there is a 50% chance of me passing this condition on if I have children. The geneticist told me that IF one of my children would have this same condition, they would only be within one deviation of that scale.

 

However, I'm a worrier, and when I first found out about this condition, I found out the worst possible scenarios (while I don't have any of those!) Is it responsable of me to have children if there is a 50% chance of me passing it on to my child?

 

But then, my life has been pretty good, I've never broken a bone, I get a cold for maybe 3 days once a year, no one in my family has ever broken a bone for that matter, We are all university educated, ...

 

I know I have gone off topic here.. but I will never know if my future child would have this condition. There are 1 00000000 other things that could happen, so in my situation I would still have children.

 

I don;'t know about having a down's syndrome child. I'm not against abortion at all... and I think every woman has every right to terminate a pregnancy if she wants to.... but I wonder where to draw the line? What if one day genetics determine that you child will be a future murderer or rapist? Do you abort it then?

[Jetta]

I generally opt not to be tested at all, but if I were and found that out I'd go for the more accurate test. I already have a history of not dealing well with a special needs kid so termination would have to be my answer (if it's allowed, otherwise adoption).

 

I know my own son wishes not to have been born and I know it's because his life is just hard. He's smart but not all at the same time. He has no common sense, he gets good grades (when he applies himself) but his short term memory is nonexistant. Once it gets to long term he's fine. And he has a major anger problem (destroys things like furniture, walls, etc.) I know it's because of a disorder but I couldn't take the stress and no it wouldn't have shown up in tests. I used to be against abortion but honestly he's a good reason why unwanted pregnancies shouldn't be kept. He appears healthy.

 

I should add prayer works to terminate pregnancies I've done it twice.

 

Regular kids are so easy but even they have quirks.

[Ash]

Thanks for all the insightful replies. To append to the situation, my partner is 40 and we're getting close to the halfway point of pregnancy. The blood test showed a chance of 1 in 8 that the baby has Down Syndrome. We're going to talk to a geneticist, then more than likely get the amnio test done.

 

To haven't talked about termination but we are worried about a special needs child. We have six children between us already, three full time, one becoming closer and closer to that and two who visit. The youngest keeps us hoping. We're having difficulties with a lot of things at the moment (long commute, her ex is a deadbeat and pays no child support, my ex won't release my share of the equity in our past matrimonial home) and we recognize the additional stress a special needs baby would result in.

 

But she really wanted this baby, and particularly wanted it to be a girl. The chances I sort of suspect are higher that it is a girl (we just sort of think so, exact timing of pregnancy points to a slightly higher likelihood, and there seems to be a higher incidence of DS in girls). She's also envisioned all of her children (she terms it as seeing them) before they were born and she was right the other three times and this time she says she's seen a DS baby girl (but is not quite sure she's not seeing a friends baby who died very close to birth and was DS ... which doesn't help how she feels). This makes a possible (but by no means definite) decision to terminate for her far more difficult. For me ... I've felt the baby moving for the past couple of weeks and that makes it very real and very hard to deny the best possible chance I can give the newest member of our family to have a good life. I feel selfish when I even think of termination because it seems like I'd be doing it for my own selfish sake but I know there is more to it than that.

 

Again though, I am very thankful for your thoughts, and it certainly gives me something to consider in the coming few days as we will no doubt wrestle with this decision.

[Iceman26]

If it is any comfort Ash, my mother had my 15 year old brother when she was 42, and my stepdad was 51.

 

He was the healthiest, happiest, and biggest (9lbs 8oz) baby I have ever seen.

[BellaDonna]

This site can offer some insight on just how many false positives that bloodtest can cause: link removed

 

See the all the "reader's comments" under the article

[Dako]

Ash,

 

No matter what you both decide, I'm sure it'll be a wise choice.

Best of luck.

[shikashika]

My aunt had her first baby at 40, and then had two more in the next 2 years!

 

All were happy healthy babies!

[TheSmilingTurnip]

When confronted with a situation like that, it's just gut wrenching to make a choice.

 

Were I pregnant with a Down's syndrome baby, I believe that I would have the baby. I couldn't bring myself to kill/terminate it. But that is me. And that is an untested statement.

 

I also think there is a common misconception that life is so horrible for Down's syndrome people and that those people are well aware of their suffering and would rather be dead. Maybe their lives aren't what we'd want for ourselves, but do they really know any differently? Are they happy with their lives? Do they *really* believe they'd rather be dead than living this life?

 

I often hear folks say things like 'I wouldn't want that child to suffer, so I'd terminate', which is their right to say and to do. What I personally find troubling is the fact that a DS baby doesn't know a different life, and who are we to judge the quality of their life? Who are we to say they are less worthy because they are of diminished capacity? So whose suffering are we really referring to? And whose discomfort are we really trying to reduce? People are free to make their decisions for whatever reason they choose, but it's troubling to me when it's not honest (and yet who am I to judge that?).

 

Yet at the same time, how does an already-strapped family handle a special needs child? I myself have a special needs child and it's not easy for me. Sometimes I regret my decision. Most of the time I don't. One thing that I do know is that she would rather be alive than dead.

 

This is just food for thought, and I hope no one takes judgment from what I've said, but I probably haven't been articulate enough to avoid having my words smell like judgment. My apologies in advance.

 

OP, I wish you the absolute best, no matter what you decide.

[Mythical_Suicide]

I refused the genetic testing during pregnancy for Downs just because it didn't matter if my child had downs syndrome, was missing an arm, leg or anything I got pregnant with him and I wasn't going to end an pregnancy just because he might have more needs. My bf's cousin has down syndrome and she lives a much of a normal life as one could live with Downs.

[melrich]

Ash,

 

Obviously at those odds you should have the amnio so you can make an informed decision. I don't think anyone can know what they would truly do unless they were actually faced with the decision.

 

For what it's worth, I know two couples who have children with DS. Both couples love their kids totally and have never regretted the decision to proceed with the pregnancy and in fact the kids are just divine and a pleasure to spend time with.

 

but it is a very personal decision and you have to factor in that a DS child will need extra care for probably (many do go on to live independent lives) much of their lives.

 

Do as much research as you can. Take the time to think about all the issues and how you guys would cope with them.

[scarew]

While I respect Melrich's opinion, make sure you know the risks of having an amnio. One of my doctors patients tested positive for downs on the blood test, then had the amnio which tested negative. From the amnio her membranes were damaged and as a result she had the baby two months early. The baby has all kinds of problems now from being premature. Otherwise it would have been healthy.

 

I opted not to be tested because I don't look at a downs syndrom baby as having anything wrong with it. My younger sister is extremely special needs. Her behavioral and developmental problems don't allow her to be happy. It has been a lifetime struggle for me and my family to cope with her. My mother used to look at other parents with down's babies (who are known to be very happy and content) and be envious.

 

So to me, a down's baby is a healthy baby. In fact, alot of them can live semi-independently. They can work, take the bus, engage in community activites, etc.

 

I am sorry that my answer is biased. It usually isn't. I just have a strong belief that individuals with DS face discrimination when they can often lead better lives than "normal" people.

 

But ash, obviously no judgement on whatever you decide. I am sorry to hear that you are faced with that decision. But please, really consider the risks for taking the amnio. Don't take it unless you are CERTAIN on termination if its positive. There is no point in putting the baby at risk if you are not even sure on that. Also, 1/8 is a higher chance than anyone wants to hear, but nonetheless, please consider the risks. There is a 7/8 chance that you have a healthy baby in there and are putting its health (and your wifes) at risk by having an amnio. Just read the facts on it. Belladonna posted some good sites. PM me if you like ((((((((hugs))))))))))

[melrich]

make sure you know the risks of having an amnio.

 

Oh I definitely agree. But at odds of 8 to 1 I should have said we would have the amnio. You are right it has to be a personal choice.

[caro33]

It really is so hard isn't it. Based on how the great crapshoot of life goes, you could be damned if you do, damned if you don't with the testing. We were contemplating the same issues until our nuchal translucency/blood test a couple of days ago. I am not sure what we would have done if it had come back with a high probability of Downs; in theory we would terminate but I was already struggling with the implications for our lives/fertility/future if we took that decision.

 

It's all the more hard when the chances of an amniocentesis (sp?) may even cause miscarriage, worse when the baby would have been fine anyway. I guess our view was that if we were not going to terminate upon discovering Downs, we would not have the amnio.

 

I used to work with Downs Syndrome adults, men and women in their 30s - 50s with ancient parents who had to look after them constantly. These were adults, with their own issues of how to manage their sexual urges, their lives, but combined with a younger child's communication skills and world perspective. Real issues, and their parents were starting to see that they could not live forever to protect their offspring. Some of these women were in their 80s, and most were doing it alone (husbands had died at war).

 

This had a major impact on me. While I could probably get my head around the concept of a child or young teenager with DS, or a high functioning DS adult, the people I knew fell into another category entirely. Lovely people, just delightful. But a hell of a lot of hard work, for life.

[Batya33]

I would want to know and although I have given a lot of thought to it I am not sure what I would do. I have a friend who had her first child at 37. Her risk of downs was 1 in 250. The baby was fine (she did not do amnio). Now she is 39 and pregnant with baby 2. Her risk of downs is half what it was 2 years ago - 1 in 540. Her doctor said it is not unusual at all - to have better odds even if you're older - age is not the only factor.

[scarew]

I don't know if I really agree with getting tested unless you plan on termination. At first I wanted to get tested. But then I talked to a woman who got the blood test back positive, refused the amnio because of the risks, cried through her whole pregnancy, then had a totally healthy baby. I don't think all that crying was good for her or for the baby. While its nice "just so we know", I don't think its our call unless we plan on getting an abortion if the tests are positive. Or else we're just messing around because we just can't wait. Why be stressed earlier than we need to be (again, unless we plan on termination)? It's not like it would help us during the pregnancy "just to know".

[melrich]

It's not like it would help us during the pregnancy "just to know".

 

I don't agree with this. As I said above, until you are ACTUALLY faced with this type of decision I don't think you really know what you would do.

 

At odds of 8 to 1, the chances are high. Without exploring further there may be the temptation to "hope for the best", to avoid really thinking about the possibility and prepare one way or the other.

 

Again it's a very personal choice but at those odds I'd risk the amnio. Not necessarily to make a decision about aborting or otherwise but also to help mentally prepare should we proceed with the pregnancy.