Down Syndrome - what would you do?

[beh700]

Hi Ash! My opinion comes as a teacher assistant in a special needs preschool classroom (so I am biased). I went into early intervention because of former one on one work I did with three children: one with Down Syndrome, one on the highly affected part of the autistic spectrum, and one with Fragile X (mental retardation). Immediately I signed up to get my masters in early intervention.

 

Why? Because these three children were the most genuine and sincere children I have ever met. They befriended anyone who crossed their paths, and when they grabbed your hand with their oatmeal-covered little hand and gave you a great big grin the last thing you would think about is their disability.

 

The child with down syndrome was playing with me on the playground and never wanting to play kickball before because of the crowd, grabbed my hand and led me to the kickball line one day. I was so excited he decided to take this step. After lots of frustration with staying in the line, and waiting his turn, we made it up to kick. He missed the ball 8 times, and luckily we had a patient pitcher who finally rolled it to him really slowly on the 9th turn...He kicked it! His smile was gigantic and since we never went over what to do next, he followed some childrens' lead and began to run around the bases (atleast 3 times.) The whole line was in an uproar with pride. I was beaming and he was too. When we got inside he was still smiling until we saw a little girl crying. Suddenly the kickball game was a thing in the past and he started asking "What's wrong? What's wrong? She hurt?" And wouldn't you know it that he never talked about the kickball game again, he just talked about the girl crying in the hall way for the rest of the day.

 

This child was a blessing in my life, just like every child is a blessing to their parents. This child is still yours, no matter what diagnosis they'll face in the future. Your expectations of the child will adjust, but the moments of joy, excitement and pride that you'll experience with this child will only be more appreciated. And don't forget that these children are extremely capable to love with their whole heart.

 

I wish you the best of luck on whichever journey you face.

[Batya33]

That's very heartfelt. I think there is a vast difference between being that child's teacher as opposed to parent. As teacher, your responsibilities and time spent may be significant but they are finite - only for part of the day and typically, only for that particular school year. You don't have to deal with all the other issues that go with raising a child.

 

Having said that - special education teachers are such a blessing because often teachers are not willing to do special education or know they lack the unique talents and skills required (I was one of them - did not want to teach special ed when I was a teacher- knew I couldn't handle it).

[rocio]

Hi Ash,

Just caught the thread. What a tough decision for you to have to make! I know you'll make the right choice for you and your family and you have my full support in whatever you decide. Please let us know what you find out.

[RayKay]

While I think there are never guarantees - I know children and people whom became disabled (some mentally) years into their healthy lives - I do think when you are in a higher risk category, testing is important even if you do not plan to terminate so you can prepare and educate yourself.

 

One of my cousin's has Down's (he calls me his favourite cousin). He is in his late 30's and has lived far beyond his life expectancy. Amazing really as he has dealt with some severe health issues including prostate cancer.

 

He is a wonderful person, and fun to be around with. He has friends, he is active in the Special Olympics, he works at a job with other disabled persons where they do assembly.

 

But he is also fully dependent on his parents, whom are now in their 70's. They did not test for it before he was born. They love him, but it has been very hard. They have three other healthy children whom often were put to side as they tried to raise my cousin with his severe health and emotional problems. When you become a parent it often is with the hope to raise them into independent, healthy individuals. Not to parent a young child for the rest of your lives; as that is what he is. His mental age is about 8.

 

It is a very personal decision for one to make. I have worked with disabled children too...ones whom had cerebal palsy mostly - and they were delightful. But their parents were exhausted, strained, often the marriage broke down with the stress. And to make assumptions based on some interaction really forgets that for them this is 24 hours a day, for the rest of their long or short lives....with huge medical bills, emotional strains.

 

It is a personal choice as I said, but I think that being informed is extremely important.

[Ash]

First of all, thanks for all your wonderful input. If I don't quote somebody or reply specifically to what they've taken the time to write, please understand that it's not because I've read your post any less carefully than another.

 

This site can offer some insight on just how many false positives that bloodtest can cause: link removed

 

See the all the "reader's comments" under the article

 

Thanks for the links. I'll be checking that. I'm doing quite a bit of research, M is doing huge amounts ...!!

 

I also think there is a common misconception that life is so horrible for Down's syndrome people and that those people are well aware of their suffering and would rather be dead. Maybe their lives aren't what we'd want for ourselves, but do they really know any differently? Are they happy with their lives? Do they *really* believe they'd rather be dead than living this life?

 

Certainly this is a consideration, and not to be taken lightly. I agree in general that the child does not know any different, thereforeeee does not suffer from that. There of course can be a host of other medical things that the child can suffer which have direct physical effects. In that way, although somewhat different from what you're saying, they perhaps do suffer more than the average child might. But again, they'll never know anything different and healthy doesn't preclude various medical things from happening and recurring.

 

I refused the genetic testing during pregnancy for Downs just because it didn't matter if my child had downs syndrome, was missing an arm, leg or anything I got pregnant with him and I wasn't going to end an pregnancy just because he might have more needs. My bf's cousin has down syndrome and she lives a much of a normal life as one could live with Downs.

 

This is often a choice people make and it certainly allows fate to play a big role in what happens. This is the approach that most take most of the time and is in fact what we both did with our first children, and the one we already have together.

 

Obviously at those odds you should have the amnio so you can make an informed decision. I don't think anyone can know what they would truly do unless they were actually faced with the decision.

 

They stats on miscarriages as a result of the amnio test itself have apparently just changed quite dramatically. They used to be stated as about 1 in 200 chance of a serious problem (generally a miscarriage) as a direct result of the amnio. That was based on a study did in the '70s. A recently done study (published late 206 I believe) now states that the numbers are more like 1 in 1600. That's an 8 fold bettering of those odds, and in fact now falls well below the chances of the overall expected infant mortality rate. The decision for an amnio based on the risk of the amnio itself is now such a small number it's not a huge concern at all for us. I suspect it may have something to do with the size of the needle which is now reportedly about the thickness of a piece of wire (of course, wire comes in all sizes but I should think with materials research a constant, smaller and smaller needles have become available).

 

I am sorry that my answer is biased. It usually isn't. I just have a strong belief that individuals with DS face discrimination when they can often lead better lives than "normal" people.

 

Please don't apologize because you feel your are biased ... of course you are. This is one of those threads were I for one welcome the bias and the honesty and feelings behind it. That's what I'm looking for, the real life, real person, emotion and thought out responses. Thank you for saying what was in your heart. All these things really do help.

 

The child with down syndrome was playing with me on the playground and never wanting to play kickball before because of the crowd, grabbed my hand and led me to the kickball line one day. I was so excited he decided to take this step. After lots of frustration with staying in the line, and waiting his turn, we made it up to kick. He missed the ball 8 times, and luckily we had a patient pitcher who finally rolled it to him really slowly on the 9th turn...He kicked it! His smile was gigantic and since we never went over what to do next, he followed some childrens' lead and began to run around the bases (atleast 3 times.) The whole line was in an uproar with pride. I was beaming and he was too. When we got inside he was still smiling until we saw a little girl crying. Suddenly the kickball game was a thing in the past and he started asking "What's wrong? What's wrong? She hurt?" And wouldn't you know it that he never talked about the kickball game again, he just talked about the girl crying in the hall way for the rest of the day.

 

I loved your story. I'll bet more than one of us finished it with a tear in out eyes. Thanks.

 

I don't know if I really agree with getting tested unless you plan on termination. At first I wanted to get tested. But then I talked to a woman who got the blood test back positive, refused the amnio because of the risks, cried through her whole pregnancy, then had a totally healthy baby. I don't think all that crying was good for her or for the baby. While its nice "just so we know", I don't think its our call unless we plan on getting an abortion if the tests are positive. Or else we're just messing around because we just can't wait. Why be stressed earlier than we need to be (again, unless we plan on termination)? It's not like it would help us during the pregnancy "just to know".

 

Again dear, you post right from where it matters. Everybody else paying attention! (although this thread is a very good one). THIS is how you say things with bias and feeling but without any judgement in the least. There's a lot of this on ENA, but it never hurts to point out when it's in the process of happening!!

 

To respond to it though, we're in a slightly different point in life than some other. We also have a great many other side threads going on in our lives which greatly complicate just about anything we do. Although we are more or less of the opinion that we will not terminate (though to be honest it has not been discussed much, nor will it be until the outcome of the amnio) there are other life altering decisions to consider. I work over 100km from home, I commute back and forth every working day. This is not at all a workable situation with a special needs child and I would start the process to changing my work place. As those of you know changing jobs ... this can be a lengthy process. My dealings with my ex are not over though we've been separated many years now. Essentially, there is a large transfer of equity due me. I would no longer have the patience or time to wait any longer and I would advise my attorney to take certain steps to expedite the process. We currently live in a house with 6 of us (most of the time) in only three bedrooms. Parts of the house are undergoing renovations but money is tight, my time is limited and things are slow. Totally unworkable to add another special needs child without increasing the space we have. I would have to immediately advise my employer (who is also going to have to deal with the fact I might be leaving the company) that I would be taking all my vacation in the next few months, and I would be requesting parental leave as soon as the baby was born. In essense, I'd almost stop working. I might even have to augment my vacation with a leave of absense which would further impact finances (as would parental leave). On the financial front we would have to see that we could do in the short term to prepare the house and have my job situation altered. It would not be easy and most likely my remaining retirement savings might have to be liquidated. I'd want to contact a financial advisor fairly soon to look at ways of managing the money and how to approach the large debt we already have in regards to the various other financial incomes and expenses we have.

 

In short, knowing we were having a Down Syndrome child would make a fundamental change in our situation and we'd have to know as soon as we could to start to prepare.

 

We talked to a genetic consultant yesterday. I happened to have been delayed getting into work as a result of a heavy, icy snowfall so I was still in town when the appointment was set up. We discussed many things, and set up an amnio for late next week and an ultrasound for early next week. The amnio has to be done in a place about 3 hours remote from where we live. The ultrasound not so, but it's not viable for me to get to work if I have a mid day appointment in the town where I live. This means at least two more days away from work, and if I'm to maximize vacation time etc. against working on the house to prepare things then this is another (although perhaps selfish) concern.

 

There is a new test using a marker die on the amniotic fluid sample (they take a bit more to provide enough for this test as well) which can tell in two or three days if there is an extra chromosome 18 or 21. It is extremely reliable as long as the lab is able to get a result at all (which they almost always do, but it's a manual labour intensive analysis). If the results from that work, they are always correct and we would know in a little under two weeks from now.

 

M of course if quite upset by most of this, she's a worrier at heart anyway as am I. This is certainly not the way either of us wanted this pregnancy to go. This is the one she wanted to enjoy, something she couldn't really do with the others. She's afraid this will start to generate a rift between us, and particularly worries that a special needs child would ultimately end up in us splitting apart. I simply don't know what the extra stress might do, but I sort of come from the camp that it's hard to imagine us being under much more stress than we have been the last couple of years anyway, so perhaps stress won't play a factor in pushing us apart. But who knows. I hope it doesn't.

 

I'd love my new baby to be healthy, but I'll love her just as much if she isn't.

 

Again, thanks all of you.

[BellaDonna]

Ash, I personally know of 3 different women who underwent amnio in the past couple of weeks and all 3 are just fine. I realize that whta I'm telling you is anecdotal.... but really complications from amnio are indeed RARE. So I don't think you and your wife should feel bad about getting further testing.

 

Here's another case- right here on enotalone- where a child was thought to have Down's Syndrome and it turned out to be a false positive

[Batya33]

I wish you all the best with this difficult choice. I just recently heard from a friend who was just given her risks of Downs that the risks of amnio - not the newer test - traditional amnio remains at 1 in 250 but that is just what her doctor told her this time and 2 years ago.

 

Look, some might say that it is wrong to choose get pregnant unless you are willing to accept whatever type of baby is delivered. Others are fine doing gender selection. And there's so much in the middle as far as views, opinions, life situations. When my friend went through the choice two years ago (whether to have amnio to know more about the risk, and then risk miscarriage,etc) I refused to give her my opinion because unless you are the parents how can you really make that call? I am sure that at least some people have a preconceived notion (no pun intended) of what they would do "if" and then when it comes to an actual decision it is not as clear.

 

What it does sound like though is that if you do have a baby you will be a person who does not take for granted that he/she is healthy - you will be appreciative and grateful (other than when you're up more than 3 nights in a row, lol).

 

Best wishes in all.

[v8vachon]

I had a blood test done that said my daughter was at risk.. and I was only 28 yrs old at the time of my pregnancy. That blood test is not accurate, they suggest an AMNIO to be certain. I went for an AMNIO consult and they told me they can do a special ultrasound and look for 5 red flags.. if any of those red flags exists.. they say AMNIO is recomended to know for sure. My daughter had none of these. They monitored me and kept doing ultrasounds.. I never had an AMNIO and my daughter was perfectly healthy.

I didnt want an AMNIO because I felt I 'd keep the baby reguardless and I didnt want to put myself at risk. I know whatever God gives is for a purpose. The blood test is not accurate.. it just gives you the # of risk. 1 out of 100 or so to speak. If it's done a few days off a certain week, it can be terribly wrong.

[Ash]

That's right, the blood test is a relatively general test. There are certain things they can look for in an ultrasound which can give a better idea of Down Syndrome. They have to do with the size and development of cetain parts of the baby's body, and I think one of them examines heart development. Also correct, the blood tests they do somehow assumes they have quite an accurate date for conception. That date is often backed up by an ultrasound to verify the dating accuracy. Unfortunately, and in part due to the chronic doctor shortage where we live, that first ultrasound was not done at the time it should have been so there is a slight question on dates as well.

 

As yours and other posts point to, the whole thing is a statistical estimate up to the point of the amnio test results. It's a rather worrying set of probabilities though.

[scarew]

Let us know how everything goes Ash. This must be a difficult time for you no matter what your decisions encompass.

[Scout]

Ash, there is no right or wrong decision, it's YOUR decision, period. I went to a pregnancy forum to check this subject out in more detail a while back. First, I read the forums of parents of DS children. Tears were streaming down my face after reading about three threads, it was so hard for them and their pain was so palpable. Then I went to the forum of people who had terminated their pregnancies, and same thing again - could not stop crying. Those people were likewise in agony.

 

Two things in particular I noted about those forums:

 

Almost none of the parents of DS children got tested beforehand to find out.

 

Almost all of the people who terminated the pregnancies did so because the fetus's condition was so severe, it probably wouldn't have survived very long after birth, or if it did, would have had a very short life expectancy.

 

DS comes with many severe physical problems, it's not just mental retardation. And even if it was just the latter, the world is not kind to people with mental challenges. Or physical challenges.

[southerngirl]

What would I do?

 

I would have the test, if for nothing else than to try to mentally prepare myself should that be what happened...

 

I would question the universe... WHYYYY MEEEEE...

 

I would whine and sulk and kick and scream and get mad about it...

 

Then I would pick myself up, dust myself off and mother the child I was given. I would do the best that I could possibly do for my child with DS. I would educate myself on it and always show love...

[chocojay]

Many of us forget that babies are born THROUGH us and do NOT belong to US. God will NEVER give us more than we can handle. Every person has a purpose in life and to terminate a pregancy just because its a possible inconvenience is a bit cruel. My best friend had a baby at 19 which turned out to have Downs and realised that she deserved a chance in life and even though she may have special needs and required extra attention, she's more loving than many "normal" children. Its sad how we have taken nature into our hands and have made choices that are convenient to US rather than what is written in our "book of life". Modern technology has allowed us to know things that we are not meant to know which is okay because of modernisation but this should not ultimately effect the purpose of man and woman who walk this earth. Im pregnant now and i did the test too but whatever the outcome, my baby is a blessing and however God intended my life to be, it will be.

[Batya33]

I don't think anyone forgets anything, it's simply that some people choose to abort where the fetus has certain levels of birth defects or disabilities for reasons that are very personal and from what I can tell extremely agonizing. My heart goes out to them. Other people do not believe, for religious reasons or otherwise, that abortion is an option ever and they choose to bring children into this world who may not live long, who may suffer tremendously, who may have significant disabilities, who may be the product of rape. Perhaps their decision not to abort is easy because of deeply held religious beliefs but my heart goes out to them, too.

 

What I am troubled by is a presumption that abortion is "cruel" and basing that on religious beliefs that not everyone holds. I have my lines too - I don't support using abortion cavalierly as a substitute for birth control -- but I wouldn't presume to impose those beliefs on someone else particularly someone going through that type of decision.

[Ash]

Chocojay, with all due respect this is not really about an inconvenience at all. If you read one of my earlier posts you'll see that if this baby is Down's, I'll have to transfer jobs, get a bigger house and somehow solve some massive financial issues. My partner and I will quite likely be in our 70's caring for a son or daughter who never surpasses the mental age of an 8 or 9 year old child. There is a very real possibility that if I and my partner don't up my efforts to basically working all of our waking hours that quality of life will suffer fur this baby and the other six children we already have. It's one thing to be standing at the threshold of parenthood in your early twenties with no or perhaps one child and realize you can overcome a changed, it's quite another to be pushing mid 40's having worked the last two decades raising kids and trying to build a life, wanting to finally take the time and truly enjoy the last baby you know you'll be able to have and then be handed a massive amount of work to do.

 

Please don't get me wrong, but on the other hand, please don't see me as trying to shirk a responsibility. Please let's also not forget than in different places and different time when testing is not performed, babies very often were left to die, or transferred somewhere and given up on by the parents. Modern technology in some ways allows us a way around that.

 

And if it all doesn't matter ... I really have to wonder why you had the test done. If the decision is made to take things the way they come, and handle whatever it is when it happens, is there a point in taking the test even if it now poses a relatively small risk? As I said, it's important for us to know what we're facing as it has a profound change on our lives. Also, I never said anywhere that termination is actually something we're considering.

 

Thank you for you views though, and it is important and valuable information. We're considering all aspects.

[RayKay]

Scout hit on an important point - that Down's is not just mental retardation for many. Others are born with SERIOUS health problems that often lead to very early deaths, and even those without serious health issues off the bat often have a shorter life expectancy as they are more likely to develop serious health issues earlier too (many have heart related problems earlier in life as an example). I know my cousin has been in and out of hospital hundreds of times over the years and had many operations and many close chances.

 

 

 

Anyway, I don't think the decision to abort in these cases is ever easy, even when there is a disability. I don't think either choice is wrong in these cases, if it right for THAT family. I don't think people choose to terminate because it is an "inconvenience" - there are some HUGE decisions that go into deciding to terminate when the child has serious health complications and I guarantee that for families whom really want these children it is not a choice made easily.

[BellaDonna]

One cannot really know the severity of the Down's Syndrome until after birth. There are different levels of severity, which are detectable visually.

 

My grandmother's brother and his wife had a Down's Syndrome baby that did not live beyond 2 years-old. Complications with her heart and respiratory system caused her to pass away despite all efforts to save her.

 

In other cases, life expectancy has gotten much better for those that are not as "severe".

 

Chances of survival and quality of life for these populations are based mainly on the heart, respiratory system, the ability to fight off infection, and the level of protrusion of the tongue (which can lead to infection, illness, and difficulty eating or swallowing).

 

Down's Syndrome is far more than a cognitive disability- there are certainly physical and medical aspects to it.

 

 

BellaDonna

[Scout]

Thank you for writing this. Many women are faced with such agonizing decisions every day. Perhaps one of them will come accross your post and take comfort in your words, Batya.

[Ash]

Not that I am really considering it at all, but my personal internal "moral" concern is ... when does a fetus or baby become self aware? I don't know the answer. Another difficulty I have is in feeling the baby kick and move, and hear her heartbeat on a monitor. It's all very real.

 

I would also want to know before birth if our baby had a very short time to live. I would rearrange my life in the short term knowing that things would change again in a few months or couple of years and I would try to live as a family for the short time that was available. Work could wait, debts could be incurred and be paid back later.

 

If the child is born into a world of surgery and I'd have to think as a result - pain, then what is the fairer way to be? Terminate or hope the suffering is not that great?

 

These things make it tough. Even though we don't know yet, she cries thinking it is her fault, and feeling the potential loss for wanting an enjoyable experience in pregnancy, and for the thoughts of bringing a child into the world that's an imperfect place and having it affect the others kids in ways we're not even sure of yet.

 

Because of my uncertain work situation due to other issues totally beyond my control (corporate takeovers etc) I fear that even telling my boss I have to take time off to go with her to the testing puts my (our only) income at even greater risk. If they're thinking my job should be transferred to a place I can't possibly move to then firing me now with the appropriate severance package will be cheaper than letting me go in several months time.

[BellaDonna]

This is such a difficult situation. I think the only thing you can do right now and stick close to your wife- be there for one another. Get the amnio- and only after seeing those results, start seriously thinking about this.

 

As I said earlier, I personally do not think I could terminate past the first trimester- but I totally support the decisions that indiviual families make. Its really no one's business but yours.

 

I have seen many parents who live fulfilling lives with disabled children, and I have seen others whose lives are not so great.

 

It takes a lot of inner strength to pull through it.

 

If the diagnosis is confirmed- the first thing you would want to do is to talk to your doctor, other parents- and figure out the resources that are available in your community such as "early intervention", respite, and other services you may qualify for if you decided to have the baby. It might help with a decision.

 

There is no right or wrong answer. You both must do what you feel is ultimately best for you and the child. I'm sure whatever you decide it will be well-thought-out and approached with great care.

 

BellaDonna

[Siriana]

To OP:

My bf has step sister with Down sindrom.

Her mom had her at older age.

Never done a test - that amnio...thing....because it's risky.

 

It's a big sacrifice and a long term commitment...your lifes completely change..it's all about the kid.

 

No more holidays, good jobs, whatever...your life is different - and very hard.

You work less but you need way more money...

Special school, medical costs.

Their life is not so short term...it can be a lot longer...she is 10 now...

 

They require a lot of attention and are completely incapable of being alone.

They have a very small amount of patience and capabilites to concentrate.

They're also sweet and cute...

 

I know what I would do...but we're all different and we have different morals, values...it's complicated question.

[Mythical_Suicide]

I just want to throw in some .02 of mine,

Everyone is saying the risk and extra attention that downs kids need, but my son needs alot of attention and special medical treatment as well.. He has asthma, severe GERD, history of Seizures, severe allergies and vertigo which causes him to pass out at random times so we are always in the doctors office, being sent to specialist, on a ton of medication and his life isn't what it should be he can't always do the normal things a 2 year old would do. So that being said and all the extra things he requires would it be right if I were to terminate his pregnancy had I known early on that he would have so many problems?

 

I think it's all a personal decision but at the same time every child deserves a right at life and everyone always looks at the bad part of illnesses and diseases but never look at the good aspects and that more often than not children who are born with downs are pretty healthy, well about as healthy as they can be. Any child born has a possibility of having problems that are late to come on. My son didn't have any problems during my pregnancy, labor or delivery but 5 days after he was born he was rushed by helicopter to the childrens hospital 3 hours away on the brink of death. Is that fair? things happen in life and they all happen for a reason if we were to terminate a pregnancy over every little ailment and problem the human population would be completely extinct in only a matter of time.

[Batya33]

That certainly is the slippery slope argument and it presumes that the right to life starts in utero which is not what everyone believes. Certainly, in some cases there are competing rights to life - a pregnant woman who's life is at risk from the pregnancy were it to continue, etc and there are many examples like that. If women who believed in abortion simply did not conceive because they knew they would abort if tests revealed a certain level of birth defect or disability that also would decimate the human population. All rights, at least to me, are balanced against other rights. The right to life is not in a vacuum to me - it can be argued in other areas too - capital punishment, etc but that is off topic.

 

I am sorry your son has all those severe medical problems and he is lucky to have a father like you! I am confused, however why your situation leads you to judge people who decide to terminate a pregnancy based on knowledge of a severe or life threatening birth defect.

[Mythical_Suicide]

I am sorry your son has all those severe medical problems and he is lucky to have a father like you! I am confused, however why your situation leads you to judge people who decide to terminate a pregnancy based on knowledge of a severe or life threatening birth defect.

 

 

For one, father? I am a MOTHER!

and two, I am not judging anyone I was just stating a matter of my opinion. I was just asking why everyone thought it was ok to terminate a pregnancy because the child has some form of illness or disability even when they don't know the severity (sp) of it to begin with. I added my sons problem to show that any child can have some form of problems and if there was a test to show my son would have the health issues that he does would I have to choose whether to terminate or not? Its sad that the world is coming in part that people dont want kids who aren't "normal" or perfectly healthy whatever happened to people having and loving kids no matter what?

[BellaDonna]

Ash, how are you and your wife doing? Any developments?