Opening a can of worms

[Jules_za]

Hi Ladies, I am hoping to have a “mature discussion” and to hear your opinions.  I am scared as He11. Tomorrow I go for my Amnio test. Firstly what scares me is the chance of miscarriage, and secondly the results.  It will be a very difficult decision for me should the results come back positive for DS.  Let me explain: I am currently married to a blind man.  This in itself is not a problem as he is extremely independent. However some thing he obviously cannot do, such a drive to fetch kids or go to the shops for me to pick up some milk on the way home, or shop for himself, go to the bank allone. If he wants top go to the gym, so must I, play blind cricket I take him.  I understood this from the start and had no problems with the sacrificing that go will being married to the most amazing man. But there are plenty of sacrifices.  We have a 1 year old daughter who is the light of our lives and takes up as much time as a 1 yr old does.  But what would happen if we had a DS baby.  Call me selfish, I know I sometimes feel this way, but I would not be able to cope. I feel as if my whole life would be dedicated to my husband and my DS child and that my daughter would suffer as she would eventually be able to take care of herself.  If I was told that my baby would be blind, I would be able to accept far easier this as have the required tools to deal with this.  

So the question is would you terminate or not? Yes I know, all children are a gift from God, and we don't have the right to pick and choose. However we live in a day and age which allows us to decide whether we will be able to provide a life for the child that they deserve. This would not be an easy decision, and I am jumping the gun worrying about

[sjm72]

Try to stay positive and remember tests in the medical community are often a guessing game.  Good Luck with your amnio and I'm sure you can handle whatever  the results may be.  You and your baby will be in my thoughts.

[alwayshope]

Firts off I commend u with trying to figure out what u would do with this information on the small chance that u found something out prenatally. Many women just never seriously think about what this test may tell them and then try to make decisions after when their world is spinning out of control. Now I can only offer my experience.
My oldest daughter is 12 and has DS. I also have a 9 yr old daughter and a son due in May.  Both of my girls have never been a burden but rather a joy. My daughter with DS has had more doctors visits and more meetings at school to plan her education. Sometimes she needs extra help in life, but she is a very important part of our family. She contributes just as much as she requires extra.
Recently we found some markers on my big ultrasound for DS. We are not going to have an amnio b/c there really is no choice for us to make. I had an amnio with my oldest and I know what I would do in this situation. I have thought about my 9 yr old and what it would be like for her to have both siblings with DS. So I decided to just ask her what she thought abought it. I asked her how she would feel if her little brother had DS too and her response was, I guess it wouldn't really matter, its no big deal about my sister. Then a second later she said laughing "oh great I would have to most of the work around here and help them both." So I said "Seriously do u think u do a lot around here?" She said " I was kidding I help when I want and my sister helps me too and I can't wait to help with the baby"
I am just rying to give u an honest picture of our life, my girls are really best friends, they play, they laugh and they fight. Some other bits of info. She didn't walk until 24 months but was potty trained at 2 1/2. (her non ds sister potty trained at 3). I hope this helps.

[AshleysMom]

Hi there:

I guess I'm in the minority here, and I do respect and understand the other view points, but I'm really not sure I would have gone through with this preg if my baby had DS.  It would have been the toughest decision of my life, and I thank God every day that I didn't have to make it.  

In terms of risk, my doc says it's just like 1 in 1600 or so now -- much lower than they orignally thought.  It didn't hurt me a bit.  I've had two with no problems.

Just curious, why do they want to do an amnio?  It looks like you are pretty young still?

Good luck with whatever you decide.

[melimeli]

there are plenty of babies that are waiting to be adopted that have not genetic disorders... think about receiving one of those into your family.

[vsentz]

well said perty!

[pertykitty]

i gave thought to this before i posted so as i could be respectful, but hope to give you thought too.  i have to ask if you were trying to concieve, i ask because we all know there are no guarentees in what the outcome is.  there are many moms on the other board with babies with health conditions.  i say this because if you really cant handle a baby with handicaps or special needs, maybe now isnt a great time to try.  how many babies would you be willing to have this situation with?  if i couldnt deal with the great amount of love and patience it would take, i wont try - but that is me. i hope you can find the right answer that works for you and your family.

[cpatow]

I have been thinking about your question since I posted above and wanted to give another thought, and I really don't mean this to cause fear for anyone so I'm sorry in advance if it does.

Another very, very dear friend of mine has a 1st grader who is in remission from Leukemia and her 14-month old daughter has had what could have been a life threatening liver condition (looks to be treated and on the mend). Neither of these conditions could be tested for prior to birth. Because of her I started running marathons for the Leukemia & Lymphoma Society and have met many, many precious children and adults who've been afflicted by this cancer and many other ailments and conditions.

I realized when it came time for my own testing that we'd test for things but not terminate unless there was some severe and surely-fatal abnormality. The reason for this is because you can test for A and B but that does nothing to rule out C through Z. We can't guarantee any sort of health or life circumstances for our unborn child anymore than we can for us but we can guarantee love and support for whatever life brings to them or to us.

My friend went through amnio and came through just fine and has had two children with life-threatening conditions anyways. My other friend had her amnio, has a baby with DS and, God willing, that's it. My own personal greatest fear is Autism b/c we thought my son had it and I just KNEW that was something I could never handle. There's also no tests for that either.

I agree with so much that everyone has said here already. The what-if game can be paralyzing and devastating. That being said, no one knows your life and your circumstances better than you...just remember that with or without tests life produces zero quarantees of what will or will not happen next.

[melimeli]

I would just try to focus on positive thoughts until you know...  I always felt thinking about terminating a pg would jinx the results...

[kellym]

Well, that scares the baheebie jeebies out of me. I did get the AFP tests done and talked w/my dh and said if anything is SERIOUSLY wrong, I can't handle that. I guess it's because I had just seen an extreme home makeover and the lady had a son that was tube fed like 20 out of the 24 hrs in a day and didn't speak and needed all of this care. I thought, that poor lady is more of a nurse than a mother. I guess it would depend on the problem the child had and would have to do sooo much research to make the decision. I take a music class w/16mo old dd. In the class there is the sweetest little girl, she looks about 10 mo's w/downs. She is the most vocal, cute and loving little girl. It makes those decisions much harder. I think that a physical and mental impairment would scare me more than just downs, but I think like another poster said, you can't tell the severity. I hope you are not faced with the decision, please keep us posted. Good luck ;)

[vsentz]

Im so sorry you are trapped in this situation. I am no one to say 'you SHOULD do this' or that.....
Now, you ask 'What would you do'.....

I'll tell you a little bit of my case: the first time i fell pregnant, i wasn't even trying, BUT it was the joyous time for me and my husband... we all of a sudden became so attached to the baby and the idea of being parents...., we called everyone and i was so happy i would tell strangers in the street i was 5 weeks pregnant! and so happy.....

One time the doctor told me if i wanted to test for all that c.rap.... and i said i was gonna talk to my dh about it...
Him and i (more me than him) decided to go ahead with the tests and of course, if it was positive for something, we agreed we would terminate the pregnancy....

Well, needless to say, I was 12 weeks pregnant, went for a sonogram.... and my baby had grown wings....
I felt THE GUILTIEST i've ever felt.....in my entire life. I felt it was my fault for deciding that....ahead of time.....for even thinking about it....

We suffered an entire year of infertility after that...

I cryed blood tears... I tore my heart, it was the worst i have ever endured...
I fought, underwent surgeries and treatments.... and finally I got my MIRACLE back....

Now, i don't even question the fact i will love her NO MATTER WHAT. This was my lesson. I felt HORRIBLE after that, and i learned, i stood up, i fought, and i won. I got her back, and if she's got whatever thing that is different from the others.... i WILL learn how to cope with it, and how to help her get ahead and win as well. I did NOT even hesitate once to say 'NO' to the doctor this time around, when he asked if i wanted any tests done.....

But like i said, that is JUST me. You asked what would you do, and this is what i did..... now im not in your shoes or anyone to judge it, but I am totally against terminating any kind of pregnancy. Unless is a condition (like annencephalia...sp?) that the baby will NOT survive outside the womb of the mother....
Other than that, i just would NOT do it (now) and i encourage you to trust life, God or whatever you believe in..... otherwise, i assure you, you will carry that regret and guilt for the rest of your life.....

I am so sorry about your case sweetie, I truely hope this turns out for the best for you AND that little miracle you are carring in your womb.
Many women would kill to have that baby you are having....... that would have been me some months ago....

[Renogirl]

I'm not sure this is a question you will get answered through a forum - its such an individual and personal decision - I personally could never terminate regardless not only because of my personal beliefs but also because we've struggled so long and hard for any baby!  We chose against doing the amnio because of the fear of miscarriage and the fact that we knew we would love our child no matter what the results were.  The other thing to keep in mind is that while the amnio can show if your child might have DS or not, it can't tell you whether your child would be severely or mildly affected.  My suggestion would be for you and your hubby to sit down and have a serious heart to heart and decide what works out best for the two of you and your situation.  Good luck with any decision you make.

Rebecka
36wks 5d

[Tanker Chic]

I have no idea what I would do, but I would certainly consider my options, and I would never judge anybody for exercising those options.  

I wish and hope the very best for you and your family.  What I recommend for now, is to not focus on the "what if"... for now.. plan for the best.. I don't believe in hoping for the best and planning for the worst. In my life, I expect good things to happen, so I plan for things to go that way. If things turn out differently, worry about it then.  

Take care... Hannah

[Jules_za]

Thank you all, I really value each and every one of your opinions and am grateful for not being judged. I need to give it more thought, only time will tell.

[pcarsey]

This is a tough situation and I understand where everyone is coming from also. When I first had my daughter 17 1/2 years ago I started my own my own daycare and had it for 9 years and took care of children who were gifted as I called them, many of them were physically challenged. I had two boys and 1 girl that had downs. One of the boys was like my own because I was good friends with his mom and have known him since he was about 7 and actually babysat him until he was 17. They are a challenge for sure! They definitely have their moments and the difference is with someone who has downs, they don't know their own strength, so they can accidentally hurt someone in a fit of rage. BUT this hardly ever happens. People who have Downs is most of the time VERY loving individuals! They want to hold everyone, they will cry with you even though they don't always understand what's going on, they will play with other children and have this look like the other child is the most amazing thing in the world to them. I can tell you that my husband (or ex husband) worked all the time and then had extra curricular activities and wasn't around much and I had a baby and then 7 years later had another baby and I got along fine taking care of my kids and my daycare kids.I can only speak for myself, I wouldn't terminate if the possibility was with Downs, however I do understand your situation and it is certainly up to you and I don't think you would be (or rather in my opinion shouldn't be) judged which ever way you chose to go because no one really knows the situation that you are in.

I can tell you that when my AFP tests came back positive two times I was faced with that decision but in my case it was for spina bifida, which I also had one girl who had that and I seriously don't think I could handle that and my husband and I talked and talked about this and he told me he would stand behind me all the way in whatever decision I made. Children with spina bifida needs so much care and my other children would have to sacrifice so much of their mom for their brother, where-as with Downs they wouldn't, it would just make things a bit more hectic because of all the doctors appointments you have to go to. But everything else is simple, just like taking care of another baby.

Good Luck Tomorrow!!! I'll keep you in my prayers!

[jifnif]

I can completely understand your concern.  I have never opted for amnio.  I am 38 and my chances are greater than that of a 20 year old.  But I have a friend that had the testing at 20 and all came back normal.  She has a baby w/ DS unexpectedly.  The baby is beautiful.  Of course, the child's life will not be exactly the same as a child w/out DS.  But this child will be loved for who he is.  I often think what would I do if.....   I stopped playing that game w/ myself.  My husband and I both decided that no matter what, we will not abort a child. We will handle it the best we can.  I'm sure it will be different and frustrating at first, until we would be able to accept the fact.  I agree that it is a personal decision.  I would not be able to terminate a pregnancy.  That child is a part of me and I would want to love him/her the best I could.  :)

[cpatow]

That is such a tough and personal decision for you and I pray you are not put into that position. I will only tell you that in our old neighborhood we had good friends with a DS baby (well school-ager by that time) and he really required no extra time / effort than their other 2 children and his DS was considered "moderate". He had physical therapy 1 time a week but his parents looked at it like their other two kids' after-school sports commitments which actually took more of their time.

Seeing them lessened the fear of DS for me,personally,much as has your husband lessening the fear of a blind child being born for you. Sometimes fear is based on the unknown and our perceptions and social understandings of what a certain issue may or may not bring for us. But sometimes once you understand what is causing the fear (and you have very valid reasons to be fearful b/c of your husband's commitments and limitations) and then once you research the fears to come to a good "truth" the answer may be more clear.

I believe there is a forum here for DS. Perhaps you should log into that forum and ask parents currently living w/ DS children what their experience life-style and such-wise is?

Again, I pray that you are not going to have to make that decision as it is very tough.
Christina