Anonymous wrote:OP, what will you do if your child develops a special need later on? Just give him/her up for adoption?

This is a total straw man argument and you know it. Willful ignorance does not advance the discussion, and certainly does not convert anyone to your way of thinking.

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.

OP, so sorry you are going through this worry and stress. We did not get a T21 result (no amnio or cvs done) but we did have a bad 20 week screening. When the doctor asked me if I would terminate if it turned out to be Downs, I honestly didn't have an answer for him. I had always thought I could never do that, but then when you are actually faced with - your child has something wrong with their brain and we don't know the extent of the damage or what their life will be like - well, it is a place no parent should ever have to be. In our situation, it had taken 3 rounds of IVF to get pregnant (even though we were only 30 at the time) and I didn't know if I would be able to get pregnant again. And... I already loved our little guy so very much and had seen him moving on the screen for many weeks at that point. My husband was the one who ultimately said - no, we're not going to terminate our son, we'll do whatever we can to give him the best life possible. So here we are, with the happiest, sweetest 3 month old I have ever met. Does he have challenges - yes, he does. Do we know the extent or what life holds in store for him - no, we don't. Do we love him any less??? Absolutely not. I love him maybe even more than our 3 year old who was my entire world before this little guy came along. If someone had told me with certainty - your baby will spend weeks and weeks in the hospital, he will struggle to breathe on his own, he will struggle to eat normally and be sent home with medical equipment and need weekly therapies and specialist appointments - I would have not thought it was possible for us to handle. But we are, and we try to take things day to day and remember that right now our little one just needs to be suggled close and loved and not to look ahead too much because no one knows what he will be able to accomplish next week, month, year. Good luck, OP.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I am so sorry that you are going through this.

I thought I'd share a blog in case you haven't heard of this one before. The young mother's second child has DS and she had no idea until she gave birth. It's a very inspiring and loving blog. I don't have a child with DS but I find this blog wonderful to follow and makes me want to be a better mother.

Good luck to you.

http://www.kellehampton.com

I know you mean well, but Kelle does not give a realistic portrayal of life with a child with DS. She gives no insight into what they've had to do to get her therapy, any milestones she's missed or been delayed on, etc. etc. Her child appears to be thriving with minimal negative side effects of having DS, but that is not the case for all children with DS. I have a family member whose son has DS and it has been lots of heart surgeries, many, many delayed milestones, and a fight to get certain therapies. I don't have an opinion one way or another if OP should terminate as I do not know the full story of her life or capabilities, but I do not think Kelle is the direction one needs to go when trying to make a tough decision like this. It shows but ONE possibility of what life could be like, and Nella is only 3- who knows what lies ahead.

Not sure if anybody else has said that, but the problem is that the range of outcomes for children with DS is vast. It is totally unpredictable in utero how the trisomy will affect the child. Some children with DS are high functioning, others stay barely alive. Hence the wide variety of opinions on how wonderful or difficult it is to raise a child with DS.

As for the original question, I don't think doctors would terminate based on MaterniT21, but follow up with a CVS or amnio to confirm.

OP, don't freak out yet. I had a 1:50 risk for each of my twins just because of my age, so there was a 1:25 chance that one of them would have a trisomy. I had a CVS. They are both chromosomally normal, and chances are, your child will be, too. Best of luck.

And it should be stressed that the range of outcomes is not primarily a question of intervention. It's not like if you do all the right things and get the best treatment, your child with Down Syndrome will be high functioning. The point is that the trisomy can express itself in different ways. Therapy can improve things for any affected child, but some kids with DS have vastly greater possibilities than others.

It's 49:50 that your child will NOT have Down Syndrome? I would be thrilled with those odds.

Regardless, it doesn't need to be black-and-white (either raise your child or abort him/her).

If he/she is born with Down Syndrome and you are not up to the challenge, allowing him/her to enjoy life with some other family would be another option.

P.S. It is "Down" Syndrome, not "Down's"... named after Dr. Langdon Down who first described the manifestations as a syndrome.

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.

Anonymous wrote:

Anonymous wrote:I am so sorry that you are going through this.

I thought I'd share a blog in case you haven't heard of this one before. The young mother's second child has DS and she had no idea until she gave birth. It's a very inspiring and loving blog. I don't have a child with DS but I find this blog wonderful to follow and makes me want to be a better mother.

Good luck to you.

http://www.kellehampton.com

I know you mean well, but Kelle does not give a realistic portrayal of life with a child with DS. She gives no insight into what they've had to do to get her therapy, any milestones she's missed or been delayed on, etc. etc. Her child appears to be thriving with minimal negative side effects of having DS, but that is not the case for all children with DS. I have a family member whose son has DS and it has been lots of heart surgeries, many, many delayed milestones, and a fight to get certain therapies. I don't have an opinion one way or another if OP should terminate as I do not know the full story of her life or capabilities, but I do not think Kelle is the direction one needs to go when trying to make a tough decision like this. It shows but ONE possibility of what life could be like, and Nella is only 3- who knows what lies ahead.

Not sure if anybody else has said that, but the problem is that the range of outcomes for children with DS is vast. It is totally unpredictable in utero how the trisomy will affect the child. Some children with DS are high functioning, others stay barely alive. Hence the wide variety of opinions on how wonderful or difficult it is to raise a child with DS.

As for the original question, I don't think doctors would terminate based on MaterniT21, but follow up with a CVS or amnio to confirm.

OP, don't freak out yet. I had a 1:50 risk for each of my twins just because of my age, so there was a 1:25 chance that one of them would have a trisomy. I had a CVS. They are both chromosomally normal, and chances are, your child will be, too. Best of luck.

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.

OP-

Based on my nuchal I was given a 1:5 chance and my DD turned out to be fine. I know how hard it is to worry about this. The sooner you can get a definite answer the better.

I have a relative who had a child with Down Syn. The child has a lot of medical issues and I think she may need to be in diapers her whole life but I believe for now she is mainstreamed. She will probably need 24 hour care/assistance her whole life. It was the right choice for them to have her. Everyone is different. Unfortunately Down Syndrome individuals can have minimal to severe mental retardation and minimal to severe medical problems. There is no way for them to predict which case it is in the womb. And obviously it is like night and day to have a high functioning vs a low functioning down child.

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?

Are you his caregiver and responsible for him financially? If not, it could be that those who are have much more complex feelings about him, which they may not share with you. They may feel guilty sharing those kind of feelings with anyone.

I am not going to give a stance either way about my opinion because it does not matter.

I do not think anyone can give you the "right" answer on here even if they experienced this and terminated or kept the fetus. What matters most is what you and DH feel is the best deicison to make for your family as a whole and how you see your future together.

I am sorry you are going through this and I truly hope the results come back ok for you. Goodluck and positive thoughts for you and your family.

We make decisions based on odds. Yes, any of my healthy children can have a horrible accident tomorrow that would require me to care for them for the rest of their lives. And I would do that despite the difficulties. But the odds are extremely low that that would happen, so it was a risk I could take.

When the fetus I was carrying was found to have T21, that was a 100% certainty. And then 20% chance that if it made it to term (60% don't), it would die before age 4. And then a 50% chance it would have a heart defect. And then a much higher chance it would have leukemia, early onset Alzheimer's, and a whole host of other conditions. Dealing with those odds is much different than dealing with the odds that your initially healthy child may some day develop special needs or have a debilitating accident.

And it is insulting to compare choosing to terminate a pregnancy due to a medical condition with making the decision based on "hair color." Anyone who would say that has clearly never faced such a decision themselves.

Like a PP, I know a mother who raised a child with Down Syndrome who consulted with me about my decision, and I was shocked when she said that while she loved her child greatly, she understood my decision and fully supported it. It is great that you all love your cousins/aunts/uncles/siblings and they have taught you a lot of life lessons, but it is a very different position to actually raise a child with DS into adulthood.

Other people have said this, but to reiterate MATERNIT21 IS NOT A DIAGNOSTIC TEST. Yes it is very accurate, however false negatives and false positives have both happened. No doctor who has read a medical journal in the last few years would ever let a patient terminate a pregnancy based on those results. You need CVS or amnio for confirmation.

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.

DW and I faced this in some way. We did the screen, and we had a big discussion about this before receiving the outcome. My brother has DS, so I'm very familiar with it. He's moderate, which means he can feed/clothe/bathe himself, but can't really read (he has a few words memorized, including my name) and wouldn't know what to do like if the house caught on fire.

Yes, our childhood was stressful growing up. He and I are 2 years apart, and as a kid it was frustrating that he got most of my parents' attention. Also he had behavioral issues, which are now fine with medication that was not available when he was a kid.

For me, the question was.. could I abort my own brother? We (DW and I) had the resources financially and emotionally to take care of a SN child. I think I viewed a termination as "shopping" for a baby. I certainly understand women who abort because they aren't ready for a child, but to abort because of a child's situation just didn't seem right for us. What's the next step? Aborting because the baby isn't the gender you want? The wrong hair color? etc.

In the end, despite my family history, the odds were quite good (1:2000 as I recall) so we aren't worried anyway. I really am glad we weren't faced with the decision, because it would be a tough one. I did have a difficult childhood due partly to my brother, but at the same time I learned a lot and am a better person because of him.

Regardless, 1:50 odds are not that "bad" anyway.

Women in the US have a 1:3 chance of contracting cancer at some time in their lifetime, by comparison.