Down Syndrome - what would you do?

[Batya33]

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?

 

So as not to get off topic, I sent you a pm.

[Scout]

I am not really sure, though, if you two got the thread off topic. It seems Ash was questioning some of these things, himself. (For example, he did ask at what point does a fetus become "aware.")

 

Mythical, I didn't mean to disvalidate your opinions, which you absolutely have a right to give - especially as a mother who is actually living the situation Ash asks about. At the same time, I disagree with you that it's a right or wrong decision. Not that you've directly said that, but that's the implication I'm interpreting.

[Batya33]

I am not really sure, though, if you two got the thread off topic. It seems Ash was questioning some of these things, himself. (For example, he did ask at what point does a fetus become "aware.")

 

Mythical, I didn't mean to disvalidate your opinions, which you absolutely have a right to give - especially as a mother who is actually living the situation Ash asks about. At the same time, I disagree with you that it's a right or wrong decision. Not that you've directly said that, but that's the implication I'm interpreting.

 

Thanks Scout. I wasn't sure so I expressed the same view in a PM including the view that the way I read the post it seemed like a judgment to me, too.

[ReadyorNot]

As awful as it is, I THINK (not 100% sure since I have never been in this situation) that I would want to terminate the pregnancy.

 

I say this because I KNOW how hard it is... My brother is mentally handicapped. He does not have downs syndrome. The placenta detached from my brother and left him with no oxygen for who knows how long. He has brain damage. He can walk and talk fine, but he has no motor skills. He cant do much for himself. We LOVE my brother more then anything and I would never want to think of life without him but he is alot of work. He is 33 years old now. My mom had a HARD time with him.. even now he is a handful.

 

What I feel is the worst is his quality of life. HE cant live with my mom anymore and hasnt since 1994. He throws fits and being a big guy can be very violent when he is in a fit of rage. He hates where he has to live.. he does nothing all day.... He constantly asks when can he get married, and get a drivers license and get a job like his little sister... Its HEARTBREAKING!

 

Regardless, we love him more then anything.. but I know what my mom went through and I wouldnt want to put a child through that.

[scarew]

How far along would your wife be after the amnio results came back Ash? When considering termination that can matter to alot of people. I could feel my baby moving at 14 weeks and couldn't imagine getting an abortion at that point, but others see it differently. Others see is as an act of compassion for the child who may have what you consider to be a poor quality of life (as readyornot pointed out).

 

My sister is soooo very special needs and does lead a poor quality of life. If I found out early on in the pregnancy that my child was going to have what she has, I actually might consider termination. She is miserable so often...

 

But she doesn't have downs syndrom. To me, downs is a different story.

 

Ash, you two have to make a decision that you won't regret. If you and your wife choose to keep the baby and you end up regretting that decision, you will be bitter at the child and at yourself, and the child WILL have a poor quality of life. In the same breath, if you choose to terminate the pregnancy and regret it every time you see a child with downs syndrome smiling or laughing, you will never forgive yourself.

 

How is your wife doing? I know its hard for you too here, but I just can't imagine what she is going through. There is a little life inside her body and she is having to make a pretty important decision for it.

[Ash]

Turns out things are not nearly as bad as we thought. I'll get to that in a minute.

 

One thing I do want to say is when I first posted the thread, what I was really wondering mostly was whether the amnio was a good idea or whether we should see what resulted. At that time only a scant few days ago we thought the amnio was much more risky than it truly is.

 

It turns out both 'M' and I were thinking the same thing, that termination for us just wasn't an option. The real question become do we risk the amnio so that we could potentially be prepared? I'm with scarew on the feeling of the baby issue, once we'd gone that far termination for us wasn't in the cards. It became a matter of knowing so we could plan.

 

But as I said a couple of lines above things have taken a great change. Turns out the family doctor was wrong in his dating of the baby. The ultrasound yesterday revealed this, the first thing the doctor said (who is extremely experienced and does all his own ultrasounds) was that the dates were wrong. We're somewhere in the range of 2 to 3 weeks (closer to 3 I think) earlier in the pregnancy than we thought. The quad screen results indicating a 1 in 8 chance are thereforeeee totally meaningless as they were done thinking the blood sample was from a baby far further along in development.

 

A huge relief.

 

M had more blood taken yesterday so the correct tests can be done on against the correct time line. The amnio is cancelled and if it should need to be rescheduled (quite unlikely we think as we're now back to the 'normal' odds for genetic difficulties) there is plenty of time. We're having the blood testing done because of the scare and emotional time we had we want to know with a fair degree of certainty that things are okay.

 

One thing I've wondered, it seems to me that incidence of Down's later on in a big family seems quite rare ... so we've got that stat on our side.

 

Some good things about the way things are now are:

1. M's fears that the baby was too small and not moving enough are of course no longer fears at all because the baby is many days further back than we thought.

2. Our original thought of when we conceived are actually correct. Appears the baby was essentially a Christmas present.

3. M did not have a period while pregnant, the one she had immediately before conception was a light one and earlier than usual likely because of pre-Christmas stress and lack of sleep etc.

4. We conceived immediately after her period (one or two days we think) which again illustrates the joke: "What do you call people who practice the rhythm method? ... Parents!!"

5. M felt the baby move at about 14 weeks. I felt it at 15 weeks so this one is healthy for sure.

6. The family doctor picked up the heartbeat very early (this was one of the two reasons he thought she was further along) which to me means baby as a good pumper.

7. It's a common thought that women increase size more rapidly in later pregnancies and after sections. This was the other reason the doc thought she was further along because she was bigger then he expected, but didn't take the fact that this is her fourth pregnancy and the first three were by section.

 

Baby of course was very active and uncooperative during the ultrasound (which I always see as a good sign) so we didn't get a gender determination. But that, coupled with us both feeling the baby so early has all the signs that this one will be a real fire cracker too ... like the 18 month old we already have. Certainly a far cry from a special needs child.

 

Thank you for all your input and support. We're not totally settled with it all, but based on the recent fact that the dating was wrong, we're right back to where we should be given our ages, though perhaps slightly ahead because as a couple of doctors pointed out ... we have a good track record so far!

 

For those of you with special needs children, my heart goes out to you. If there's ever a way I can be of help ... just ask.

[piegirl]

The test that are speaking of is not always accurate. My sister has 3 children all are healthy with no problems yet she had this test run with each pregnancy and every time she was told by her physician that her child would likely have down's syndrom.

 

So get further testing to be sure before making any decisions.

[BellaDonna]

I'm so glad to hear that things might be fine afterall.

 

That's the problem with that AFP test- it often scares people for no reason- it's such an unexact science.

[southerngirl]

Im also glad to hear things are okay. Wow, sounds like a healthy baby then if she was feeling it's movement that early!

 

Good luck and whatever the outcome I know that you will be okay. You'll not be given anything that you cant handle, from the sounds of the posts your super-parents by now!

[Ash]

Good luck and whatever the outcome I know that you will be okay. You'll not be given anything that you cant handle, from the sounds of the posts your super-parents by now!

 

Super tired parents some days!

[Ash]

Just a quick update. Yes, the intial test results were wrong as the dating of the baby was incorrect. A followup test showed something like a 30000 to 1 chance or something like that. Certainly so far under the expected infant mortality rate that we're not proceeding with the amnio, nor any other testing.

 

Next step really is the "20 week" ultrasound. Curiosity is getting the better of M. She's fairly convinced it's a girl to the point of wanting to buy girl clothes. She's had three boys so far, a girl would be a whole new thing for her. She's worried about whether she'll know how to look after a baby girl and whether she's "girly" enough herself. I just laughed, I already have two daughters and said she'll be just fine and I think they're easier to handle (most days!) than boys.

 

Anyway, all is good.

 

Thanks for all your comments and support.

[BellaDonna]

Just a quick update. Yes, the intial test results were wrong as the dating of the baby was incorrect. A followup test showed something like a 30000 to 1 chance or something like that. Certainly so far under the expected infant mortality rate that we're not proceeding with the amnio, nor any other testing.

 

 

I'm so glad things are okay!

 

The 20 week ultrasound appointment is fun.

[Batya33]

That is such a great result! Congratulations!

[Scout]

Wonderful, Ash! I'm glad and relieved for you. I know this was a stressful wait.

 

How much longer before the next ultrasound?

[Ash]

I think the ultrasound is next week. It's a bit later than the 20 weeks due to all the other stuff happened. That, and now that spring has well and truly hit ... all the doctors seem to be at the office a little less than usual ... hmmm. Getting appointments set up has been a challenge.

[scarew]

\\ Woot woot! Yah for a good test result! I am so happy that it all worked out Ash! Yes, this is a very anxious time for your wife. I am sure that she will be girly enough haha! Well, the little girl will be raised just as girly as she is, and that appears to be just fine.

 

Sometimes I am worried I won't know how to raise a boy. I have five sisters, and one little brother who is the girliest little dude ever! Then I remember all of the only children who have never seen a baby before and raise whatever they are given and have no problems.

 

It sounds like she wants a girl. Let us know what it is! The 20 week ultrasound is so cool. You can see what they look like!