has anyone on here terminated due to a positive T21 result?

Anonymous
Hang in there OP - one suggestion, when you get the results back next week, if DS, you may not want them to tell you the sex.
Anonymous
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:If you are truly anti-abortion for yourself, why did you have the genetic testing done?


+1


This is really innane. Many people who are anti-abortion for themselves will have genetic testing done without thinking about the possibility of termination. If there is a gentic defect, they want to have the time throughout the pregnancy to prepare emotionally, financially, etc. for the reality of having a special needs child.


I'm one of the "innane" posters. Didn't mean to be offensive. I just really do not get this perspective.
Anonymous
Just another viewpoint OP.

My youngest sibling was born without any defects, however was diagnosed with autism at age 3.

He is nonverbal, not potty-trained, and throws constant fits. He is now 14 and weighs 160 pounds. He will never live independently, he most likely will never be able to feed or wash himself.

If you don't think your prepared to have an infant that has Downs, why do you think your prepared for parenthood? Anything could happen. You step up to the plate when whatever comes at you happens.
Anonymous
Well I think I am one of the only ones posting that has actually gone through this. I received a very bad screening result with my second pregnancy (1 in 8 for T21). I immediately did a CVS and the results confirmed T21.

Like many people, I am pro-choice but never thought I would have to consider this decision myself. I hadn't really even thought about what I would do if I received a bad diagnosis, but my first reaction when the doctor asked if I would take any action based on my screening results was a horrified "No!"

But then reality sunk in. While waiting for the CVS results I did a ton of research. We thought we had a decision-- terminate for T13 or T18, but not for T21. And then the call from the genetic counselor with the CVS results, and all of our decision-making went out the window. We just knew what we were going to do, almost immediately. It was a Monday and I made the appointment for Friday, just to give us time to change our mind. We did not waiver in our decision once that week, and we haven't ever since. It's been almost 3 years and we have never regretted our decision.

I would never try to persuade anyone one way or another, this is a very personal decision based on individual beliefs and experiences. I will also say that it is IMPOSSIBLE to know what you would do unless you are facing a real decision. Almost everyone who talks about this says they would terminate for "incompatible with life" conditions but not for Down Syndrome. But the reality is that more than 90% of women who get an early diagnosis of T21 choose to terminate. So clearly lots of people change their mind when faced with the decision.

Good luck, OP. I truly hope you do not wind up in my shoes, but if you do, whatever you decide, you will get through it.
Anonymous
My AFP results came back 1:18 chance of downs. At the time, the only option provided was an amino with FISH (FISH comes back in 24 hrs and is considered extremely accurate). The test came back negative for downs but with another genetic anomaly. The research on the anomaly was out dated and I considered terminating and wasting my whole pregnancy being upset and wishing I would miscarry. I'm lucky that the baby was born fine and has had minimal impacts with her genetic makeup. I know this is not the same as downs but I do understand that sick feeling of not knowing and then not knowing what the next steps are. I feel for you as a happy time in your life has made you have internal turmoil.

I do agree with a PP about having a healthy baby and having medical issues down the road (I had this with baby #3). You never know what is to come. I wish you the best on your decision. Educate yourself as much as possible and if needed seek therapy to heal.

If a genetic issue does appear, I love Dr Rosenbaum at Children's Hospital in DC. I've also read that women with these high false positives for DS are more at risk for preeclampsia (which I had but didn't read about the connection until last year). GL
Anonymous
Anonymous wrote:I will also say that it is IMPOSSIBLE to know what you would do unless you are facing a real decision.


I also went through this same thing. I also terminated for T21. It was the worst experience and worst decision I had to make in my entire life, but I do not regret the decision. Do I still think about it all the time? Yes. But I did what was right for myself and my family. YOU HAVE NO IDEA WHAT YOU WILL DO UNTIL YOU ARE FACED WITH THE VERY REAL DECISION. Thoughts of "what if" and the reality of a bad diagnosis might seem similar but they are worlds apart.
Anonymous
Anonymous wrote:
Anonymous wrote:.


My uncle has special needs and cannot care for himself. However, I have a completely opposite view than the poster above. A "special needs" person is still capable of giving and receiving love. My Uncle has taught me alot about appreciating people regardless of their disabilities. I also think having him in my life has made me a more compassionate person. I would never submit to genetic testing, much less abort a pregnancy over the results. The way I look at it, everything happens for a reason and having a special needs child isn't the end of the World. Imagine if you were in an accident that resulted in you being physically or mentally handicapped, would you want your loved ones to give up on you?


I am the first responder who posted saying she had an abortion. To address the bolded part of what you said, I don't agree that everything happens for a reason. That implies that everything is a part of god's master plan. But I don't agree with that. Sometimes shit just happens. Having a special needs child would be the end of (not to get all REM on you) the world as we know it. That was part of what went into our decision - the lifestyle DH and I discussed wanting and how we planned to incorporate our children into that. How we would be able to incorporate a special needs child into that, and what our lifestyle would be with a special needs child. Now sure, tomorrow we could wake up and find out our DS has developed severe autism overnight. Or I could get hit by a car tomorrow and become a vegetable. We'd deal with that. But we had an option with a fetus, and we used it. Isn't that what options are for?
Anonymous
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:For Down's, Maternit21 is 100% specific and sensitive.


It's such a new test that if it says, "yes, Down Syndrome," I would probably have the CVS or amnio also. But, if it said "no Down Syndrome," I would believe it and wait for the anatomy scan at 18-20 weeks to see if anything else concerning popped up.


Agreed I would get Cvs confirmation before even considering...


Lab error and mixed up blood vials is not unheard. From somebody that spent time in a lab


This is true: I had second trimester quad-screen labs recently, and got a result of 1:175 (elevated) for DS. Turns out the dates on my labs were wrong and the revised result was 1:2550. I would definitely wait until you have follow-up results and then proceed with CVS or amnio before making any decisions.

Anonymous
Anonymous wrote:
once I see a heartbeat and the baby is moving around, that baby is alive.


For me, once I see a heartbeat and the FETUS is moving around, that FETUS is a living parasite . I don't mean parasite in a gross way, but that's what a fetus is. It is living off of another living thing, and can't live independently. I terminated. Aborted. Whatever you want to call it. I don't feel badly about the decision at all. We also have a first child, and one of the things we had to think about was how it would impact him.

I reached out to a girl I grew up with whose sister has Downs, and asked her about her experience growing up, and now with her, as adults. Obviously, she loves her sister very much. But what she described to me is not what I want for the child we already have. Her parents separated for a few years from the stress. She was teased relentlessly (which I found interesting because I remember her sister and remember everyone standing up for her and being kind to her). She didn't get much attention from her parents, who had to give so much attention to the other daughter.

We thought about what kind of couple we are, what kind of family we're trying to create, how comfortable we are bending that, how well a baby/child/teen with Downs would fit in, how much patience we have, etc. We thought about the very real possibility of having to care for this child well into their adult years, about the burden of caring for him/her falling to our older child. We made the right decision for us. I don't think anyone who chooses to keep a fetus that may have DS is making the wrong decision. It just has to be the right decision for you.


terrible
Anonymous
Anonymous wrote:Just another viewpoint OP.

My youngest sibling was born without any defects, however was diagnosed with autism at age 3.

He is nonverbal, not potty-trained, and throws constant fits. He is now 14 and weighs 160 pounds. He will never live independently, he most likely will never be able to feed or wash himself.

If you don't think your prepared to have an infant that has Downs, why do you think your prepared for parenthood? Anything could happen. You step up to the plate when whatever comes at you happens.


This is exactly why I haven't been able to go on to have a second child.

I was pregnant with #2, amnio indicated DS and, after agonizing, I terminated. It was utterly horrible. And worse, it made me realize that I wasn't prepared to take whatever life threw at me, and so feel like I'm not prepared to face the risks of another pregnancy as a result. When I was pregnant with #1 I had no idea what it meant to have a healthy child. Now I know, if that makes any sense.
Anonymous
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:.


My uncle has special needs and cannot care for himself. However, I have a completely opposite view than the poster above. A "special needs" person is still capable of giving and receiving love. My Uncle has taught me alot about appreciating people regardless of their disabilities. I also think having him in my life has made me a more compassionate person. I would never submit to genetic testing, much less abort a pregnancy over the results. The way I look at it, everything happens for a reason and having a special needs child isn't the end of the World. Imagine if you were in an accident that resulted in you being physically or mentally handicapped, would you want your loved ones to give up on you?


I am the first responder who posted saying she had an abortion. To address the bolded part of what you said, I don't agree that everything happens for a reason. That implies that everything is a part of god's master plan. But I don't agree with that. Sometimes shit just happens. Having a special needs child would be the end of (not to get all REM on you) the world as we know it. That was part of what went into our decision - the lifestyle DH and I discussed wanting and how we planned to incorporate our children into that. How we would be able to incorporate a special needs child into that, and what our lifestyle would be with a special needs child. Now sure, tomorrow we could wake up and find out our DS has developed severe autism overnight. Or I could get hit by a car tomorrow and become a vegetable. We'd deal with that. But we had an option with a fetus, and we used it. Isn't that what options are for?


PP, many DS babies are not diagnosed until well after birth. Do you think those parents should also have the option of ending their babies' lives?

Because, for one, it is ending a heartbeat either way.

For another, that already happens here, in America.

As for all your careful plans about how you would order your life: "it is a poverty to decide a child must die so you may live as you wish". --Mother Teresa
Anonymous
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:.


My uncle has special needs and cannot care for himself. However, I have a completely opposite view than the poster above. A "special needs" person is still capable of giving and receiving love. My Uncle has taught me alot about appreciating people regardless of their disabilities. I also think having him in my life has made me a more compassionate person. I would never submit to genetic testing, much less abort a pregnancy over the results. The way I look at it, everything happens for a reason and having a special needs child isn't the end of the World. Imagine if you were in an accident that resulted in you being physically or mentally handicapped, would you want your loved ones to give up on you?


I am the first responder who posted saying she had an abortion. To address the bolded part of what you said, I don't agree that everything happens for a reason. That implies that everything is a part of god's master plan. But I don't agree with that. Sometimes shit just happens. Having a special needs child would be the end of (not to get all REM on you) the world as we know it. That was part of what went into our decision - the lifestyle DH and I discussed wanting and how we planned to incorporate our children into that. How we would be able to incorporate a special needs child into that, and what our lifestyle would be with a special needs child. Now sure, tomorrow we could wake up and find out our DS has developed severe autism overnight. Or I could get hit by a car tomorrow and become a vegetable. We'd deal with that. But we had an option with a fetus, and we used it. Isn't that what options are for?


PP, many DS babies are not diagnosed until well after birth. Do you think those parents should also have the option of ending their babies' lives?

Because, for one, it is ending a heartbeat either way.

For another, that already happens here, in America.

As for all your careful plans about how you would order your life: "it is a poverty to decide a child must die so you may live as you wish". --Mother Teresa


Let's just lay it all out now. 1. I've never claimed or aimed to be Mother Theresa. 2. I don't feel any guilt for the decision we made. We made the best decision we could with the information we had. 3. I am glad to live in a country where people can choose different options. I would not think poorly of anyone who gave birth to a DS baby not knowing that diagnoses was coming and chose to give the baby up for adoption to someone who felt they could be a good parent to a child with special needs.
Anonymous
I had CVS in the first trimester for all of my pregnancies never bothered with the nuchal b/c my DH is a carrier for a rare genetic disorder and CVS also routinely tests for T21, etc I would have aborted if any of my babies had a genetic abnormality. Simple as that and my DH fully agreed and supported my decision. Luckily we did not but it's always stressful waiting for the results.

One of our friends terminated for T21. Completely understandable.

Decide what will be best for you and your family. No need to justify it to anyone.
Anonymous
OP, what will you do if your child develops a special need later on? Just give him/her up for adoption?
Anonymous
Anonymous wrote:OP, what will you do if your child develops a special need later on? Just give him/her up for adoption?


You obviously do not have a SN child or ever had to go beyond screening for a genetic disorder while pg. A living breathing child, SN or not, is not the same thing at all as a fetus that you never met.
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