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

[Anonymous]

Anonymous wrote: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.

Me too.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, I have a sibling with special needs. It's not downs. But he will need to be taken care of for the rest of his life. The financial models expect him to live to be 75. He will outlive my parents and will even outlive ME. (I am significantly older).

This is a terrible burden on my parents, who have had to scrimp and save and plan to ensure that there are funds to care for him. It will be a burden on my siblings too. Until you have lived it, you cannot even imagine the ways in which this responsibility has taken over their lives and, to be honest, destroyed their happiness, although they would never admit that out loud.


I personally would not have a child with serious special needs. I had the tests with my last pregnancy because I was over 35. I knew when I went for the tests that if there was anything significantly wrong, I would terminate. I have seen first hand what life is like for the child, the parents, the marriage, and the family of a seriously SN child and I know it is not a life I would wish on anyone.

How "serious" downs is, and how serious it is in this case, I don't know. But the best of luck to you with whatever you choose to do.

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?

DH and I did all the testing. Not so that we could terminate but so that we could prepare. All tests came back fine and we had healthy babies. Or so we thought. One is seriously mentally ill and is on the autistic spectrum. The other an anxiety disorder. As much as we resisted we still wound up medicating and it seems to have effected their immune systems so now they get every virus that goes around.

I love these kids and I'm proud to be their mother. It's not easy and one of them is going to need care after DH and I are gone but it's something we are preparing for.

The preparing is something my own grandmother did for my aunt who was "slow" and epileptic. She had no idea that my aunt would marry and have a wonderful loving husband that has taken care of her for more than 50 years. I learned to prepare for the worst and hope for the best. We have no idea how their lives are going to turn out.

[Anonymous]

Anonymous wrote: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.

They may be "genetically enhanced" with an extra chromosome, but we are so much more than our genes. And their bodies may not be genetically perfect, but that doesn't prevent them from loving, and being loved in return.

[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.

I could have written the above. I was never in the position of being faced with this decision but did need to have an amnio due to earlier testing that suggested a higher likelihood of Downs. As I waited for results I thought about what I would do and my logic was exactly the same as the PPs. I was also living in another city at the time and hadn't told anyone about the pregnancy and delayed telling even longer as I waited for the amnio and its results because I did plan to terminate under those circumstances. Thankfully everything turned out to be just fine and we had a healthy second child.

I know several families through school and church whose lives are blessed by their children with Downs and I can absolutely understand why families would make those decisions but it just wasn't the decision that I felt would be right for my family.

[Anonymous]

Anonymous wrote: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.

I find this view point very common and I don't understand it at all. So you are "philosophically" OK with a person acting irresponsibly, getting pregnant accidentally, and deciding to terminate a perfectly healthy pregnancy, but you are offended by a person who looks at the difficult life that would result from the birth of a child that will definitely have both physical AND mental impairment for its entire life and deciding it would be best to not go forward with the pregnancy. This line of thinking makes no sense to me.

[Anonymous]

The OP asked for the experiences of others facing T21 diagnoses, not your opinion on abortion. Seems like she and her husband already have their stance on that and the unsolicited opinions of others aren't likely to change that.

OP, I wish you well with whatever happens and with whatever you decide.

[Anonymous]

I had surgery when I was 27 to remove a tumor. I remember a DS women in the room where we waited for the surgery. She was in her early 30's. She had many surgeries in her life but only looked at them as the doctors hurting her. She couldn't understand the reason behind the surgeries. She kept screaming "please don't hurt me again" This haunts me to this day.

3 years ago I found out that the baby I was carrying had T21. We decided to terminate. I couldn't imagine putting my baby through this pain. I had no way of knowing how severely disabled she would be. She might have been physically okay. But I will never know.

[Anonymous]

Hi. I haven't read through all seven pages of this thread because:
1. Have three small kids and limited time
2. Reading about terminating a kid like mine isn't top on my list of fun things to do
So, sorry if I'm repeating anything already said.

We have a four year old daughter with Ds. She's sandwiched between an older sister (2 years, 3 months older) and a younger brother (2 years, 3 months younger). While I do agree that Kelle Hampton doesn't share all aspects of having a child with Down syndrome, I will say that we love our daughter very much and get much feel our lives are blessed by having her in them. We do not view her as a burden. Her life, and by extension ours, is different than we had planned, but it isn't "worse". Milestones are missed, but when they are attained the celebrating is much grander than with either our "typs". Her speech is harder to decipher, but when she says, "mama, I love you," you better believe I understand and, knowing how much work we out into that, feel the reward to the nth degree.

I cannot tell the OP what decision to make. Sometimes I feel we are burdened with too much information. We are robbed of the ability to just live the life we are given because we actually have the option to "decide". We are also bombarded by misinformation, especially from doctors. I'd suggest you check out NDSS or NDSC for accurate information. Old information is scary and limiting. Kids with Ds go to college and live independently. They have jobs other than baggers in the grocery store. Not that any of that is terrible, it's just no longer necessarily accurate.

I remember writing to someone years ago who had a wonky prenatal screening. I told her, and I will tell you, I understand where you're coming from. I've been you. I once thought Down syndrome was something to fear. I didn't know what our lives would hold. I thought our eldest was going to have her world rocked. I thought we would have a completely Different life. I thought that because I didn't know; I didn't live it. As someone who is now with a living, breathing person with Ds I can tell you, it isn't scary. I am still me. We are still us. Our family is what we always would be, just with a slight difference. Your kid is the same kid they were yesterday and the same kid they'll be tomorrow and if you chose to continue your pregnancy, you will be fine. You will be awesome!

Lastly, please note that those in the disability community prefer people first language. Kids with Ds are people first ~ so not "Down(s) kids". Small change is language, big change in mind set.

My friend had a prenatal DX and did not terminate. She went on to adopt domestically. Her blog is Two Blue Eyed Beauties.
And now I have to go cook dinner, so I'm sorry if this is disjointed or filled with grammar and spelling errors.

[Anonymous]

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.

[Anonymous]

Last post:

http://mdbeau.blogspot.com/2006/02/another-perspective.html

[Anonymous]

OP, I am sorry you are facing this. At the end of the day, you must choose what's best for you and your family and once you do choose, know that it's the right decision.

[Anonymous]

Anonymous wrote:Hi. I haven't read through all seven pages of this thread because:
1. Have three small kids and limited time
2. Reading about terminating a kid like mine isn't top on my list of fun things to do
So, sorry if I'm repeating anything already said.

We have a four year old daughter with Ds. She's sandwiched between an older sister (2 years, 3 months older) and a younger brother (2 years, 3 months younger). While I do agree that Kelle Hampton doesn't share all aspects of having a child with Down syndrome, I will say that we love our daughter very much and get much feel our lives are blessed by having her in them. We do not view her as a burden. Her life, and by extension ours, is different than we had planned, but it isn't "worse". Milestones are missed, but when they are attained the celebrating is much grander than with either our "typs". Her speech is harder to decipher, but when she says, "mama, I love you," you better believe I understand and, knowing how much work we out into that, feel the reward to the nth degree.

I cannot tell the OP what decision to make. Sometimes I feel we are burdened with too much information. We are robbed of the ability to just live the life we are given because we actually have the option to "decide". We are also bombarded by misinformation, especially from doctors. I'd suggest you check out NDSS or NDSC for accurate information. Old information is scary and limiting. Kids with Ds go to college and live independently. They have jobs other than baggers in the grocery store. Not that any of that is terrible, it's just no longer necessarily accurate.

I remember writing to someone years ago who had a wonky prenatal screening. I told her, and I will tell you, I understand where you're coming from. I've been you. I once thought Down syndrome was something to fear. I didn't know what our lives would hold. I thought our eldest was going to have her world rocked. I thought we would have a completely Different life. I thought that because I didn't know; I didn't live it. As someone who is now with a living, breathing person with Ds I can tell you, it isn't scary. I am still me. We are still us. Our family is what we always would be, just with a slight difference. Your kid is the same kid they were yesterday and the same kid they'll be tomorrow and if you chose to continue your pregnancy, you will be fine. You will be awesome!

Lastly, please note that those in the disability community prefer people first language. Kids with Ds are people first ~ so not "Down(s) kids". Small change is language, big change in mind set.

My friend had a prenatal DX and did not terminate. She went on to adopt domestically. Her blog is Two Blue Eyed Beauties.
And now I have to go cook dinner, so I'm sorry if this is disjointed or filled with grammar and spelling errors.

NP. This reply was very moving. Thank you.

[Anonymous]

I have a friend that did terminate due to the baby having T21 and a co-worker who decided not to terminate. Both still belive they made the right decision and do not regret it at all. I think you really have to evaluate your own family situation and do what is best for your family. No one else can make this decision for you. Good luck Op and I hope next week you will be getting promising news that will make this post moot.

[Anonymous]

Anonymous wrote:Last post:

http://mdbeau.blogspot.com/2006/02/another-perspective.html

Great blog post. Worth a read

[Anonymous]

Anonymous wrote:Last post:

http://mdbeau.blogspot.com/2006/02/another-perspective.html

What a moving post. Wow. Thank you.