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

[Anonymous]

Anonymous wrote:Having read through the entire thread let me add:

The 90% termination rate is inaccurate. It is closer to 60%.

The 60% not living past age 4 is inaccurate. I am hoping you're not looking here for accurate statistics.

Ds is not the level of seriousness that people here seem to be viewing it as. Our daughter walks, talks, is potty trained, makes jokes, likes the play ground and Olivia. She's not a vegetable. I have worked with and been around people with Ds who are a variety of ages. There is a range, as with anything, but I guess I just don't view it like some here seem to.

I have known MANY, MANY people who have children with Ds (Lisa Morguess being one of them). Many kids do have surgery. Often the surgery is so specialized that it is really scary but medically not a big deal. Heart surgery these days is very low risk. As is the intestinal surgery that is often common in kids with Ds. I have a friend whose son is very complex. He is the same age as my daughter and is not doing what she's doing. She feels blessed to have him in her life. And he is, by far, the exception, not the rule.

EVERY family I know with a child with Ds still vacations. They still have a vibrant family life.

You are misquoting. My post said "And then 20% chance that if it made it to term (60% don't), it would die before age 4. " This states that 60% of fetuses with DS do not make it to term, and 20% who do make it to term do not make it past 4. And you are right, these numbers are off. In fact, they are worse (from Medscape):

Approximately 75% of concepti with trisomy 21 die in embryonic or fetal life. Approximately 25-30% of patients with Down syndrome die during the first year of life. The most frequent causes of death are respiratory infections (bronchopneumonia) and congenital heart disease.

And I have seen the 90% termination stat in many different place, what is your source for 60%?

[Anonymous]

Op
Did you get your MaterniT21 test results back?
I am similar boat as you numbers wise. Got my results today from MaterniT21 test as normal.
Now debating if I should go through amnio or not

[Anonymous]

As a mom of two kids one with DS I feel for your decision and you must do what is right for u and ur family. But I will say that we decided not to do any invasive testing and all noninvasive test had low odds. I am so glad we did not find out until birth because it was a beautiful easy pregnancy. My daughter was the first person I met with DS and I immediately fell in love. Is it hard work yes but parenting is. We have lots of dr appts and therapies but I have never felt burdened and I only felt scared initially. You will be amazed at what you can do.

[Anonymous]

You are misquoting. My post said "And then 20% chance that if it made it to term (60% don't), it would die before age 4. " This states that 60% of fetuses with DS do not make it to term, and 20% who do make it to term do not make it past 4. And you are right, these numbers are off. In fact, they are worse (from Medscape):

Approximately 75% of concepti with trisomy 21 die in embryonic or fetal life. Approximately 25-30% of patients with Down syndrome die during the first year of life. The most frequent causes of death are respiratory infections (bronchopneumonia) and congenital heart disease.

And I have seen the 90% termination stat in many different place, what is your source for 60%?


Sorry for misreading/quoting. Like I said, I was trying to read quickly. I don't know the veracity for your source for the 20% and I'm really not in the business of splitting hairs. I primarily wanted to point out that my life with our daughter is one I feel is worth living. I do know NdSS states that upwards of 80% of individuals with Ds live into their 60s.

Yes, the 90% statistic is widely published and referred to. There's been recent push back on the number saying it is inaccurate. Here's more info: http://www.mostlytruestuff.com/2012/10/down-syndrome-abortion-statistics.html

[Anonymous]

I read this story in the Washington Post today and thought of this thread:

http://www.washingtonpost.com/blogs/liveblog/wp/2013/02/07/when-bill-met-shelley-no-disability-could-keep-them-apart/

[Anonymous]

I went to college with a young man with Down syndrome. Yes actual college he deal really well. He was an awesome artist. He did need minor assistance with some things.

Those test aren't accurate. If they were my friends healthy little boy with no special needs would be dead with some rare disorder the amino said he had.

[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.

And if a screening test were available that could have detected this illness before birth, do you think your parents would have chosen to being a profoundly ill child into the world, one who would never be verbal, potty-trained, or independent, and whose future holds little or no hope of improvement? I know I wouldn't have done that to you or to my children. Will you care for your brother when your patents are dead?

Abortion can be the healthiest, most loving choice for a family. It doesn't make her a bad patent that she thinks it might be best.

[Anonymous]

Anonymous wrote:

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.

And if a screening test were available that could have detected this illness before birth, do you think your parents would have chosen to being a profoundly ill child into the world, one who would never be verbal, potty-trained, or independent, and whose future holds little or no hope of improvement? I know I wouldn't have done that to you or to my children. Will you care for your brother when your patents are dead?

Abortion can be the healthiest, most loving choice for a family. It doesn't make her a bad patent that she thinks it might be best.

Why stop at birth? Why not let parents keep the power to stop their children's heartbeat anytime they decide they are not up to the task?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

And if a screening test were available that could have detected this illness before birth, do you think your parents would have chosen to being a profoundly ill child into the world, one who would never be verbal, potty-trained, or independent, and whose future holds little or no hope of improvement? I know I wouldn't have done that to you or to my children. Will you care for your brother when your patents are dead?

Abortion can be the healthiest, most loving choice for a family. It doesn't make her a bad patent that she thinks it might be best.

Why stop at birth? Why not let parents keep the power to stop their children's heartbeat anytime they decide they are not up to the task?

+1

[Anonymous]

I am the poster from page 1 with the SN brother who will outlive me. Just so you understand, he won't be able to toilet himself, feed himself, shower, walk, or put himself to bed. So we're talking pretty severe here.

And it's not only about the effect this has on the mom and dad, although that is very serious. It's also about the burdens my brother has to live with. My parents work very hard to give him a good quality of life. But the poor kid.... suffers in many respects.

It's also about the serious responsibility this leaves for the rest of the family - not so much me, however. I am only his half sibling. His full siblings are significantly younger than I am and are the ones who will be charged with his care in a few years when my parents become to old to handle his needs. It's a daunting thing for them to have to face. And a terrible thing for my parents to know they've saddled them with.

We all LOVE my brother very much. Of course we would never do him harm. We will all participate in ensuring his well being to one degree or another.

It's sort of like.... let's say you marry and have kids and then your spouse turns out to be a horrible person. If you could go back and do it all over, do you not marry them? But then you don't get the kids you have.... and you wouldn't trade them for the world. So it's a catch 22: Your ex is the worst thing that ever happened to you, and also the reason for the best thing that ever happened to you. I can't wish my brother unborn. What I CAN do is learn from the life experience in my family. Knowing that I am not capable of the herculean efforts my parents make (I can't even lift my brother, my dad still can for now).... knowing that I wouldn't want to burden my other kids with a disabled sibling IF it can be avoided.... knowing that my brother's existence is sometimes painful to him.... knowing the almost impossibility of ensuring for a SN child's financial future.... knowing that I personally might die before my SN child and therefore be unable to ensure his/her well-being... I wouldn't continue a pregnancy that was likely to result in a similar situation.

My fear was so bad I didn't want to have a second child. I got one that was healthy; I didn't want to roll the dice again. (Pregnancy 2 was accidental.)

I understand that some people with Downs have a great quality of life. Again, best wishes to OP and others in such situations, making difficult decisison.

[Anonymous]

My kids are teenagers now so the technology may have changed, but if I remember correctly the triple screen blood test was notorious for false positives.

I would have a CVS test now if it's too early for an amnio.

Then you will have difinitive information and you can make a decision based on that. I would not terminate based on a blood test.

[Anonymous]

OP as difficult as this is you have to ask yourself if you believe in Eugenics. Most people will say no. However ending a pregnancy because of a "defect" such as this is practicing Eugenics.

[Anonymous]

Eugenics is systemic. OP is making a personal medical decision for herself and her family.

[Anonymous]

OP, I hope you get the all clear in your results later this week. I can't say what I would have done in your shoes with a DS/T21 child. My then-husband made it clear he did not want a SN pregnancy carried to term. Nor would he have been a good parent to a SN child, but I digress..

What I do know is that I/we made the decision to terminate a T18 pregnancy at 22 weeks. It was heart wrenching for us in different ways, and that was knowing our dx was incompatible with life. We were told that my uterus was acting as both life support and a vice for the baby, with no amniotic fluid whatsoever. Tests revealed multiple organ defects or absent completely.

My advice to you is clinical more than anything, because the emotional part is unique to you. If you do decide to terminate, I hope you can find an OB/GYN or Perinatologist who will point you to an OB who will administer a lethal injection to the baby's heart, which is far more compassionate than a live birth on a frail baby, or a D&C. We found a brave doctor who despite working for a religiously affiliated hospital, agreed to the procedure for us on a Saturday with the office closed, payable in cash. I still feel this is such a travesty for women to feel like it's a back alley option, even with such dx's as these.

It was awful, I prayed and cried when he gave the injection, and the next few days to be scheduled for delivery seemed forever. We had a service for him, and took pictures (he was beautiful in every way externally) and got some closure that way.

I wish you peace in whatever option you choose. It's never an easy decision, always ultimately personal, and the strain on your marriage either way is immense. Best wishes for you and your family!

[Anonymous]

Anonymous wrote:Eugenics is systemic. OP is making a personal medical decision for herself and her family.

That's one definition but not the only one.
Medical researchers estimate that 80 percent or more of babies now prenatally diagnosed with Down syndrome are aborted. (They estimate that since 1989, 70 percent of Down syndrome fetuses have been aborted.) A high percentage of fetuses with cystic fibrosis are aborted, as evident in Kaiser Permanente's admission to The New York Times that 95 percent of its patients in Northern California choose abortion after they find out through prenatal screening that their fetus will have the disease.

Read more: http://www.seattlepi.com/local/opinion/article/The-abortion-debate-that-wasn-t-1178454.php#ixzz2Kk9iTZEs