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2nd Trimester
Testing for Down's Syndrome...why bother?
My doctor asked if we wanted to test for Down's Syndrome when they did all the other tests...but since there's no treatment or cure for it, i figured why bother? The doctor said that the reason they do it is because some parents chose to abort the pregnancy when they find that out. Otherwise, there's no other reason to test for it. I find that mildly disturbing.
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Re: Testing for Down's Syndrome...why bother?
I didn't realize how common it was for people to terminate a pregnancy because of Down syndrome. My co-worker just found out a couple weeks ago her baby had Downs and she aborted at 20 weeks. I can't imagine.
I think some people do the testing because it can help them prepare for a child with Down syndrome also.
My doctor said he wouldn't answer why do it? He said that it depends on what your intentions and beliefs are on the matter and he wouldn't tell me one way or the other. I thought that was great. I don't do the tests either.
I opted for testing not for termination purposes, but if my baby was born with disabilities of any kind I'd want to know in case I wanted to know in order to research potential medical issues. I'd also want to be able to make a decision about whether to stay home rather than work. Which would mean major lifestyle changes.
I think that's a big reason to know, for me at least.
I think its crazy for a doctor to say that, while some people chose to abort some people chose to prepare themselves. I think he made an ignorant comment.
I will have my screening this week. I did it before. DH had a brother with SB, born without a skull, and only lived 5 hours. Why do I test? So I can prepare if, God forbid, the worst is to happen. I would want to make sure my brother is in town, that grandparents are alerted as soon as I go into labor, so that my family can be with me and my baby if time is precious.
I don't see the logic in spending months planning the colors to a nursery and picking out travel systems, but not making the choice to plan ahead for what may come after delivery. I personally find that irresponsible.
We skipped at the 1st Tri screening but on Friday did the AFP test ...
We did it because if there are complications of any kind, the local rinky-dink hospital where we plan to deliver would not be equipped to handle it -- we tested to know if we could plan to deliver here, or if we need to start making other plans to go to a big city.
This is all.
As a chromosomal abnormality, Downs Syndrome can also cause other complications. I had a strong marker for Downs and have since had an amnio with negative results, but I STILL have to go for a fetal echo to make sure the baby's heart is okay.
I HATE the impression that testing leads to termination. I know some people do, but we needed to know so we could prepare ourselves and make sure we'd done everything we could to help our child into this world and once it got here.
this is a good point. ??
Well, I'll be honest- I try to look at it from every perspective and not say that I would never abort if I found out my baby had Down's. I don't really know what I would do until I am at that moment.
If my dr told me my baby had Down's I would pray, research, go with my gut- is it a false positive? And most importantly- Can I afford this? My DH and I are so strapped for money as it is without baby, how can I take care of a special needs child?
It may sound terrible- but I don't rule anything out until I am faced with the hard facts and having to make the decision.
Luckily- I had the NT screening just to get an extra u/s. Everything came back fine!
We chose not to do it because we know 3 couples who have gotten false positives and a woman in my doctor's practice did the Quad with a "normal" result and her baby had Downs. I just don't feel like the test would have done much to alleviate my worries but could have done a lot to make me worry more when there potentially could be no problems. Everyone makes their own choices for personal reasons and I do think it is nice that there are more options out there available to parents.
That being said, my doctor left it up to us. She did mention that first trimester screening was good for those that would terminate but also followed that up with that if you are not someone who would terminate then it would potentially be good to prepare yourself and gather more information. I don't think that is irresponsible on her part, just letting us know some of the reasons they are done.
I can understand your concern here, but I'd like to reassure you a little bit. As someone who grew up with a special needs sibling, I can tell you that you must be a strong, unwavering, dedicated advocate for your child's needs and corresponding services. The state can help to an extent, and there are private organizations that will aid in providing special needs children/adults with therapy, schooling, and other services. Occasionally (and with alot of lobbying) you can obtain grants for certain equipment to be installed in your house to assist your child in their everyday activities.
My sister was not officially diagnosed with a particular disorder because she has a combination of several such as autism, cerebral palsy, and other genetic disorders, and they don't fit under one category. For years, my family's income had to qualify for Medicaid just so that she could get services such as physical, speech, and occupational therapy. Private insurance companies wouldn't consider her for coverage. Now that she has been diagnosed with cerebral palsy, services are much easier to obtain for her. All I can say is that you do what you have to do, and while it's not the easiest road, it's worth it for your child.
Sorry this was longer than I anticipated, but I hope it helped a little in knowing that you can still make ends meet when you have a special needs baby. And by the way, I'm glad your test results were good :-)
I don't get this comment. I had both screenings, everything came back normal. I am much less worried now than I would be if I hadn't had screenings! There are a small percentage of "false positives" which can be evaluated through amnio, but there are almost no "false negatives" (this is the nature of all screening tests). Most people get correct, negative results - that's what makes me feel less worried.
We just wanted to know.
Plus, if the doctors know the baby will have special needs, there's sometimes different teams/doctors ready and waiting when you deliver, just in case.
90% of people terminate their pregnancies once they find out they have a baby with Downs Syndrome. I did at 17 weeks. There are many reasons for doing this, as disturbing as you might find it. Many DS babies have severe medical issues such as heart defects, kidney and digestive issues, besides mental disabilities. You can't judge someone for doing it until you've been in their shoes and faced the same diagnosis. Your holier than thou attitude is laughable and.....um, mildly disturbing.
Also, I was as adamant against getting the testing as anyone in this thread. I was convinced 100% that I would never, ever terminate a pregnancy. Then at the last minute we decided to have the testing and we faced the worst. It's very easy to convince yourself of what you would do in that situation when it's not a reality for you.
I totally agree. Most children born with Down Syndrome have heart and other defects and need special care the second they are born. Not doing everything you can to prepare for your child's medical needs (especially if they are life-threatening) is completely and totally irresponsible.
I have no doubt that you and everyone else will love their child no matter what. Having a birth defect in the family and knowing multiple people with children born with defects, every last one of them will say how the time to prepare is priceless. It can mean the difference in the hospital you choose, the team of doctors you have surrounding you, preparing for in home care, etc. I understand the worry and unwanted stres. But DH and I decided that, as parents, we will constantly be stressing over the welfare of our children. For us the most effective and responsible way for us to deal with it is to, first know where we stand, and then tackle each obstacle as it comes at us.
There are a lot of issues OBs don't automatically test for because it doesn't happen frequently, ie Down Syndrome. But if the testing is available why wouldn't you want to have it done if it could mean the difference between life and death at birth. If you want to take a gamble with your baby's life, then good for you.
I commend your honesty. DH and I have talked about it and we would consider termination.
I think it is very judgemental to say that I am irresponsible because I chose not to have the testing done. I am a Labor&Delivery nurse, if that assures you that I made the decision after analyzing all the pros and cons. I didn't just say "well, since I won't abort my baby I won't have the tests". There are so many things that can go wrong in pregnancy that CAN'T be detected by screenings. My hospital has a level III NICU, and with my background I already am prepared and know what my resources are if I do have a child with special needs. It was a tough call to make, but ultimately it is up to the couple. Not having the testing does not make me irresponsible.
I'm not looking for a debate or anything, but I'm curious about some things. Since you've been very honest, I'd like to ask you, if you don't mind. What makes Down's Syndrome so bad that it would merit termination? If it's the medical issues involved, such as heart and kidney issues, why does that affect your decision? What if the baby didn't have Down's, but had heart/kidney issues - would you still terminate?
some forms of trisomy are so terrible that the fetus stands ZERO chance of survival after birth, or will be brain dead, or will suffer pain their entire lives, etc. I think every couple has the right to terminate beore those realities come to pass.
I would not automatically terminate based on one test, but if I was faced with knowing that my unborn child wouldn't survive the birth, or would be bedridden their whole lives, needing extra care that is physically and finacnially beyond our ability to handle, DH and I are in agreement that we would've aborted. If that makes us terrible people, so be it. We think it makes us responsible parents, especially to the son we already have.
I was never be judgemental to someone who chooses to terminate after finding out thir child will be serverly incapacticated. I've never been in those shoes. Who am I to say what is right for another family?
The NTS is non-invasive and has no risk... to me- there's no reason not to do it if insurance pays for it - granted, it only gives you a risk profile- not a yes/no answer.
We did the NTS with both pregnancies. I am AMA now and could get an amnio- but we have decided not to b/c of the m/c risk. We would not abort if something was wrong anyway.
i don't think anyone mentioned the RISK involved in TRULY knowing the answer - yes or no- that there is downs/trisomy, etc. It is NOT irresponsible not to get an amnio or CVS b/c there is risk involved. And not to do the NTS- well, some people can't deal with the results b/c they are often false... so I think those who think it is so irresponsible need to look at it from other angles. it's easy to judge when you are young and have little risk.
I also do not judge those who choose to abort. It is a very personal and hard decision for any couple to make - and i respect the right of every couple to choose what is best for their situation.
DH and I have both worked with special needs children and I have several in my family. We aren't getting the test done because it doesn't make a difference to us if it comes out positive or negative.
You don't need a test to tell you that you should prepare for something. You should be preparing yourself for anything and everything.?
{Clapping hands}. I do not think that anyone can say for certain what they would do in these circumstances. I know lots of people think they can, but I think the reality that 85% or more of babies ID'd, even at the 20 week ultrasound, are aborted speaks more loudly than all these people who profess they know they would do nothing. To me having an NT at 11 or 12 weeks is the most responsible thing to do.
I agree with you on this. While it's hard to prepare for everything, at the very least don't kid yourself into thinking everything will always be perfect.
I don't care if you choose to have the test done or not. And never once did I say someone who does not test is irresponsible. I labored over this decision for sometime when I was pregnant with DD. Did I really want to know, what would I do, would I be better off not knowing...? This is the decision my DH and I came to weighing our personalities, fears, worries and the sad reality of what happened with his brother. In our specific situation we do believe it would be irresposible of me not to have the test done. If my child is born with only hours to live - then I feel as if I do need these months to prepare.
Hear hear!!
So aside from facing a child with some potential special needs, why did you choose to terminate the pregnancy? You didn't give any reason in your response.
I don't have a "holier than thou attitude" - I merely posed the question and stated that I find it disturbing that someone would terminate for no other reason than the child may have some special needs. I can understand wanting to prepare oneself in case something does come up, but to terminate all together on the basis of the baby potentially having some special needs is remarkably selfish.
Down's Syndrome is hardly life-threatening on its own. Babies can develop any number of hardships after birth that are undetectable in the womb. Would you give up your child if she had cancer? Would you love him any less if he was born with a different kind of mental disorder?
So you have your reasons for terminating - that's great - why don't you share them with us instead of just stating the obvious, "Many DS babies have severe medical issues such as heart defects, kidney and digestive issues, besides mental disabilities."