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

[Anonymous]

OP here, just checking back in (it's been a difficult 24 hours). First, I really want to thank everyone-I do mean everyone-who commented on this post. I knew I'd get a range of responses, and for those who actually have gone through this and those who have dealt with DS sibs/close family members, your insight has been valuable. For those that question why, if I am anti-abortion myself, would I terminate, or even get tested, I agree it's a disconnect. I am extremely type-A, and so I told myself I would want to know what was up prior to birth if there is going to be a life-altering disability. That being said, my numbers for DC #1 were so great that I just kind of assumed that the number for #2 would be as well (and you know what they say about assuming). It's only once the results came back that this abhorrent thought (abhorrent to me) started to come up. And while I am against abortion for myself, DH certainly is not. Of course he recognizes we are equal partners, and it's not like he'd push me to terminate if I decided I couldn't, but he just doesn't feel the same way as I do.

I also agree that materniT21 isn't necessarily as clear-cut as CVS or amnio, and of course I will be getting one of those done if the blood test comes back positive. I am just really struggling with this sudden change in what I thought was a firmly held belief. It's been rocking my world, the thought that I could terminate if I got a positive DS result. Again, those who shared their termination experiences as well as those who shared their life experiences (both positive and negative) with close family with DS have been really helpful. DH actually has a cousin who has DS, and is often at family functions. His parents are in their late 60's and still caring for him-he's in his late 30's. I know that his parents, while they love him, also feel like it's taken a huge toll on their lives. Do we want that? Honestly I just don't know.

Lastly, I think the biggest thing I'm struggling with, besides the difficult realization that my abortion feelings have changed suddenly, is the fact that if we do go forward with this pregnancy, everything I've envisioned about "our family life"-vacations, holidays, day-to-day life-will be drastically different. I will have to go forward with zero expectations, and that is very hard for me. I know I am getting way ahead of myself and borrowing trouble, but that's what I do best, which is yet another reason why I am not sure it's a great idea for me to raise a DS child.

Ugh. I will probably be loosing sleep for this until results come in next week. Thanks to those who offered support...this has been a very good thread to read. I am off to check out some blogs that were suggested earlier.

[Anonymous]

For those that question why, if I am anti-abortion myself, would I terminate, or even get tested, I agree it's a disconnect.

It's not necessarily a disconnect at all.

If prenatal tests suggest the possibility of a problem, abortion is not the only option. You can be anti-abortion personally, but still want to feel like you have a heads-up to a potential problem. Why? So you can research ahead of time, feel a little better-equipped to face the future, consider adoption, etc. All things that are somewhat easier to do while still in early-mid pregnancy.

Best wishes to you, OP.

[Anonymous]

Anonymous wrote:DH actually has a cousin who has DS, and is often at family functions. His parents are in their late 60's and still caring for him-he's in his late 30's. I know that his parents, while they love him, also feel like it's taken a huge toll on their lives. Do we want that? Honestly I just don't know.

Just FYI as many people don't realize what is out there. I'm the one who has a brother with DS. Most governments around here provide very good support for people with DS. My brother moved out of my parents' house and into a group house 10 years ago, in his early 20's. He lives with 2 other SN adults, and there is someone there 24 hours/day. It's a really good situation for him -- the caregivers change rarely and treat him like family (one even lives in the basement). He goes to "work" every day, which he does some menial tasks in a supervised setting. He really enjoys this. I can say this because he's my brother and we can "read" each other very well even if he doesn't communicate so much.

Almost all this is paid for or organized by the government, including his job. He's on SSA (Social Sec for people with disabilities) and the only costs my parents have are for incidentals like clothing or some spending money. They've set up a special needs trust for him, so he'll always be taken care of. He lives about 10 miles away from my parents, and they see him weekly. He also comes to spend the night during family holidays, though like many people with DS, he likes routine so he'll ask to go back to his own house the next day.

He goes to a church with a special mass for SN adults. There's a bit of a divide because some of the parents are getting quite old (70s) and they refuse to seek other living arrangements for their SN child. All these services are available, and usually free, but they're not willing to let go. I'm happy my parents arranged this early on, as it allowed them time to look into all options, find the best situation for him, and then monitor it. I shudder to think how things would end up if the decision had to be made suddenly due to an unexpected death or incapacitation of the parent.

I guess my point here is, don't assume that if your child has DS, that you'll be in the same situation with them forever. There are plenty of options out there for them to grow and enjoy a happy life as adults.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'm a parent of three children, one with special needs. I can tell you that when you first receive the diagnosis, you worry the most about what life is going to be like and how you are going to manage. Then life moves on and you don't think about it as much anymore. All of my children have enriched my life in profoundly and I really have never felt burdened by the needs of any of my children (including my special needs child). My special needs child is just as happy and fulfilled in life as my other children. Humans have an amazing ability to adapt to what ever is thrown at them. OP - You are the one that has to live with your decision, but give yourself more credit for being able to handle the worse-case scenario.

Whenever people say "special needs" like this I am suspicious that it is something relatively mild, compared to the seriousness of DS. Not sure "special needs" is relevant or comparable to DS the way many people seem to use that term on this board.

I'm the poster in the first quote and my son has muscular dystrophy. You can judge for yourself how serious or not you feel that disease is.

[Anonymous]

I'm surprised that it took until page 3 or 4 for the rudies to come out. OP, I have nothing to add, other than that I wish you and your DH the best and I hope you don't have to make the decision.

[Anonymous]

Anonymous wrote:OP here, just checking back in (it's been a difficult 24 hours). First, I really want to thank everyone-I do mean everyone-who commented on this post. I knew I'd get a range of responses, and for those who actually have gone through this and those who have dealt with DS sibs/close family members, your insight has been valuable. For those that question why, if I am anti-abortion myself, would I terminate, or even get tested, I agree it's a disconnect. I am extremely type-A, and so I told myself I would want to know what was up prior to birth if there is going to be a life-altering disability. That being said, my numbers for DC #1 were so great that I just kind of assumed that the number for #2 would be as well (and you know what they say about assuming). It's only once the results came back that this abhorrent thought (abhorrent to me) started to come up. And while I am against abortion for myself, DH certainly is not. Of course he recognizes we are equal partners, and it's not like he'd push me to terminate if I decided I couldn't, but he just doesn't feel the same way as I do.

I also agree that materniT21 isn't necessarily as clear-cut as CVS or amnio, and of course I will be getting one of those done if the blood test comes back positive. I am just really struggling with this sudden change in what I thought was a firmly held belief. It's been rocking my world, the thought that I could terminate if I got a positive DS result. Again, those who shared their termination experiences as well as those who shared their life experiences (both positive and negative) with close family with DS have been really helpful. DH actually has a cousin who has DS, and is often at family functions. His parents are in their late 60's and still caring for him-he's in his late 30's. I know that his parents, while they love him, also feel like it's taken a huge toll on their lives. Do we want that? Honestly I just don't know.

Lastly, I think the biggest thing I'm struggling with, besides the difficult realization that my abortion feelings have changed suddenly, is the fact that if we do go forward with this pregnancy, everything I've envisioned about "our family life"-vacations, holidays, day-to-day life-will be drastically different. I will have to go forward with zero expectations, and that is very hard for me. I know I am getting way ahead of myself and borrowing trouble, but that's what I do best, which is yet another reason why I am not sure it's a great idea for me to raise a DS child.

Ugh. I will probably be loosing sleep for this until results come in next week. Thanks to those who offered support...this has been a very good thread to read. I am off to check out some blogs that were suggested earlier.

OP, my nephew was diagnosed with DS about a week after he was born. I posted a picture of him earlier, but for some reason, Jeff deleted it. You can read about him at his mom's blog. Please look at her blog and scroll down just a tiny bit, to see the picture I had posted:

http://moreaboutmatthew.blogspot.com/

You sound so much like me, in the extreme Type-A-ness and borrowing trouble and such. When I anticipate things, I feel them and live them a thousand times more than the reality. It's hard.

Someone else mentioned this book already, but it's called Expecting Adam, about a couple of super-ambitious Harvard grads who married young and had a baby, but were still trying to keep all the balls in the air...when they unexpectedly got pregnant again, and then learned their son had DS. When they are waiting for the prenatal diagnosis to be confirmed, her husband says "of course" they will abort the baby if he has DS. And she knows this is something they have always agreed about. But all of a sudden, with her son kicking and swimming inside of her, she flips out and says no. Her book is quirky, but honest and insightful.

I had a (chromosomally normal) baby a couple weeks after my brother and his wife had my nephew. So our little babies have been growing up together. And so far, my totally healthy little girl has given me a world more trouble. I'm so sleep-deprived these days, I say sentences backwards, while he is a little angel baby, always has been. No serious physical disabilities at all. Every milestone met. Therapists come to their house to work with him. He's just awesome in every way.

DS children have never done better. SO many discoveries and advancements in their care have been made. There has never been a better time to have DS. And this happens to be the same moment when 90-95% of prenatally diagnosed babies are aborted. Even as long wait lists stand for families desperate to adopt DS babies--SPECIFICALLY DS babies.

The odds are vastly in your favor. This is probably an academic exercise. But learn from it, no matter what. What is mother love? What is it to love a child into existence? You said you have fallen away from your faith. Let this experience lead to deeper questions about the meaning of life. Why are we here? Can suffering be redemptive? Is human life a gift?

Blessings to you and your family.

[Anonymous]

Anonymous wrote:To the posters saying they would simply not have a child with special needs -- how on earth could you know? Only some issues are tested for in utero. No way to test for autism which affects 1 in 54 boys. No way to check for countless other disorders. It's a leap of faith for all of us.

Agree. Complications can occur at birth too, leading to outcomes you would never in your worst nighmare imaging. And yes your life will change. That is one of the risks of deciding to conceive.

I hope you find peace, OP.

[Anonymous]

PP here

*imagine.

[Anonymous]

Anonymous wrote:

Anonymous wrote:DH actually has a cousin who has DS, and is often at family functions. His parents are in their late 60's and still caring for him-he's in his late 30's. I know that his parents, while they love him, also feel like it's taken a huge toll on their lives. Do we want that? Honestly I just don't know.

Just FYI as many people don't realize what is out there. I'm the one who has a brother with DS. Most governments around here provide very good support for people with DS. My brother moved out of my parents' house and into a group house 10 years ago, in his early 20's. He lives with 2 other SN adults, and there is someone there 24 hours/day. It's a really good situation for him -- the caregivers change rarely and treat him like family (one even lives in the basement). He goes to "work" every day, which he does some menial tasks in a supervised setting. He really enjoys this. I can say this because he's my brother and we can "read" each other very well even if he doesn't communicate so much.

Almost all this is paid for or organized by the government, including his job. He's on SSA (Social Sec for people with disabilities) and the only costs my parents have are for incidentals like clothing or some spending money. They've set up a special needs trust for him, so he'll always be taken care of. He lives about 10 miles away from my parents, and they see him weekly. He also comes to spend the night during family holidays, though like many people with DS, he likes routine so he'll ask to go back to his own house the next day.

He goes to a church with a special mass for SN adults. There's a bit of a divide because some of the parents are getting quite old (70s) and they refuse to seek other living arrangements for their SN child. All these services are available, and usually free, but they're not willing to let go. I'm happy my parents arranged this early on, as it allowed them time to look into all options, find the best situation for him, and then monitor it. I shudder to think how things would end up if the decision had to be made suddenly due to an unexpected death or incapacitation of the parent.

I guess my point here is, don't assume that if your child has DS, that you'll be in the same situation with them forever. There are plenty of options out there for them to grow and enjoy a happy life as adults.

It sounds like your brother is high functioning and has a wonderful life.

Unfortunately Down Syndrome children can also be born with severe medical disabilities that require dozens and dozens of surgeries throughout their life and profound retardation. It is completely different to raise a child like that, and unfortunately there is no way pre-birth to determine the severity of the syndrome. I have a relative with Down Syndrome who will never have the quality of life your brother has and it has nothing to do with being given options, taking advantage of government support, etc. You seem very naive.

[Anonymous]

I had wanted children for years but the high cost of living in DC and the lack of family support here hindered us from trying until later. I was finally pg with my first at 39, and all my co-workers who had had children later said of course you get the amnio just to make sure, but it will be fine. Of course, their's were fine, mine was T21. I was devastated because I truly felt that wouldn't happen. Of course, that was a stupid conclusion. Anyway, my dh and I had predecided that we would terminate for Downs, and that is what we did. It was hard, and it's still hard, but I do not regret my decision. We went on to have two beautiful, happy and healthy children. Someone said something earlier about a Down child having something wrong with their head. That is incorrect. There is something wrong with every cell in their body, and it is something that will never get better. I am not advocating, just telling my story. It is a place I would not wish for anyone to be because I was there. We console ourselves that we would not have had our particular children if we had kept our first because each egg in your body brings a unique child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

You seem to have some romantic idea that being a good parent to a child with special needs is just a matter of deciding to do it and then loving them enough. If your child were going to potentially need a lot of specialized medical care, would you not want to prepare for that as much as possible before the baby arrived? You wouldn't dream of having a healthy child without setting up a nursery, buying diapers, researching carseats, etc. Why wouldn't you want to learn everything you could about a medical condition, get recommendations for excellent doctors, research the latest therapies?

I used to work in a specialized surgical ICU for children with cardiac problems, and we had one of the best pediatric cardiothoracic surgeons in the country. Whenever he would be on vacation for a week, the other very good surgeons would do all the cases. Nonetheless, there were always more codes while he was gone, and it seemed like at least one child would not survive. It happened every single time he was away. Congenital heart defects are pretty common among children with Down's. People came from several states away to see this surgeon. I would. I would do everything I could to maximize my child's chances for a healthy life, preparing as early as I could.

I get all that. The perspective I don't get is one that wouldn't terminate for a serious medical problem, especially one that the child will probably die from anyway after a short, painful, expensive life. (I realize this is not T21, but it does describe the other trisomies tested for.) I don't actually think that life is a miracle or that my fetus is meaningfully alive before it can live without me.

[Anonymous]

OP, I have not been in your shoes but I feel for you. My first child has special needs (cerebral palsy, due to a brain injury at birth) and I wonder what I would do if I found out another child was going to have SN too. I am pro-choice but philosophically against abortion when the parents are not choosing whether to have a child but rather trying to choose what kind of child to have. But, I am realistic enough to know that that philosophy might not actually mean I wouldn't consider termination if I had bad test results for a future pregnancy. After all this is one of the reasons I'm pro-choice--a choice about a pregnancy is incredibly agonizing and personal, and I dont think anyone else who is not her has the right to make that decision for her.

Anyway, my only advice is that I'm reading this book called Far From the Tree about kids who are significantly different from their parents in a variety of ways. There are chapters on dwarfism, autism, schizophrenia, prodigies, multiple severe disabilities, Down Syndrome, and several other things. It's very thought-provoking. Anyway if you are looking for reading material I'd suggest looking at the first chapter and then the Down Syndrome chapter.

[Anonymous]

Anonymous wrote:

It sounds like your brother is high functioning and has a wonderful life.

Unfortunately Down Syndrome children can also be born with severe medical disabilities that require dozens and dozens of surgeries throughout their life and profound retardation. It is completely different to raise a child like that, and unfortunately there is no way pre-birth to determine the severity of the syndrome. I have a relative with Down Syndrome who will never have the quality of life your brother has and it has nothing to do with being given options, taking advantage of government support, etc. You seem very naive.

I don't think I'm naive. I've been around a huge number of people with DS, since I attended his events at school, church, etc. When he started school, they had special schools (now they do mainstreaming, which started when he was half-way through school). A few were severe (profound retardation), but most were moderate, and a few were mild.

I googled around (can't find a definitive link though with percentages), and most sites state that most DS cases are mild to moderate, so my observations being around many DS people seem to line up with that.

I agree severe DS is much more complicated, but I just didn't see it that much. I really don't think it's that common.

[Anonymous]

Anonymous wrote:
I agree severe DS is much more complicated, but I just didn't see it that much. I really don't think it's that common.

Answering my own post. Found some data:

Profound: 3-12%
Severely: 25%
Moderate: 55%
Mild: 14%

http://www.epa.gov/oppt/coi/pubs/III_8.pdf

I didn't realize they categorize profound and severe separately, but regardless, the data is similar to what I observed being around many DS people.

[Anonymous]

Here's another blog by a mom with a kid with Ds. My thouhts are with you, whatever choice you make. http://www.lisamorguess.com/