The option not many people want to talk about

[ChangedMyMind]

Everyone knows it exists and most people have some pretty strong opinions on it. I always thought a termination was fine until I went with a friend of mine for hers and the things she was saying as she was coming out of the anasthetic that she wasnt even aware of broke my heart. Morally, I dont have a problem with it at all, every woman is entitled to make her own decisions about her own body.

Now, its an options thats staring me in the face.

I just got back my results from an NF scan with a 1:12 risk of Downs Syndrome. I always thought that faced with that scenario, termination would be my preferred option. Now that its actually happening I'm not so sure.

So I guess I'd just like to hear that I'm not alone. That there's other women that have chosen this path based on the reality of having a baby with Downs Syndrome.

On one hand I kinda feel like its a selfish choice because the baby's not my idea of "perfect", at the same time I think perhaps its the fairest option because its not fair to anyone to have to endure a life of the associated medical risks DS brings. But on the other side of the coin, this might be my only option to have a baby (I'm 37 and at that age considered high risk anyway) so perhaps I should just be happy to have any sort of baby whether it has DS or not???

[Pinkzy]

I'm sorry, I don't have any advice as I've never been in your position but I could not read your post without replying. Just wanted to offer you some hugs :hugs:.

*bump*

[nat278]

:hugs::hugs::hugs: what a position to be in...

I know you would have already looked into everything but keep in mind there is a 11/12 chance that your bub doesn't have DS, and if by chance your bub does you don't know how severe it is, I know DS people who are mild and live happy independant lives and that maybe the case for you too.

Having said that if I was in your position and my views are pro choice on this topic, what is right for me isn't for another. My DH suffers depression he is in control of it now and we both don't like the thought of termination but we are realistic of the fact we have 3 kids 16,12 and 3, we are trying for #4 ATM and have talked about 'what we would do if...' and both think in theory that termination of a 'known disabled child' would be our best choice, if actually faced with that decision I cannot predict what we actually would do but in my mind with DH's depression being a constant issue to keep under control we love our kids and want more but if we had the foresight to a severe disability knowing the reality and stresses associated with caring for a child with special needs, I doubt my DH could handle it and therefore that affects my whole family and would have to base my decision on the best interest of everyone.

I wish I had the answer for you and wish these virtual :hugs:give you some comfort through this tough decision.

[MRJB]

I am terribly sorry you are going through this. I have no advice but wanted to share a link with you of a birth story that has stayed with me since the day I read it! There are more entries on her blog as time went by and she has since started a DS foundation!

It's truly beautiful and might give you some hope, should you be faced with the decision you are dreading.

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

[the girls mum]

Aww sweetie what a heart breaking position to be in.

I can not relate to the downs sydrome, however I have had a termination when I was 19. I am now 33 and actually have just been referred for councelling relating to that (and other issues) - so it is not something that *I* ever stopped thinking about (however I do know other friends who have had terminations and feel 100% it was the right decission *for them* and they have gone forward fine).

I would suggest talking to mothers and fathers of children who have DS to get the good and bad side of it first hand.

Does your bubba 100% have DS or is there a chance it doesnt? I guess that is another thing to wiegh up in your mind?

Another thing, dont let anyone try to guilt you either way, this is you and your partners decission ultimately.

It is such a hard position to be in and I really feel for you.

I really hope someone else on here can be of more help. x

[RunningWithScissors]

This is a very touchy subject! People will have extremely strong views on it.

Ive been faced with termination at 19 weeks. My son had a congenital malformation of his lung, which was crushing his heart and other lung. It wasnt a mental disability (unless he was starved of oxygen at birth from the heart and lung issue).
It was a rare issue and it was the worst case seen in this state, one of the worst in the country. They searched overseas for answers and information.
They told me to prepare for his death in utero.

I chose to give him a chance.

He is now a healthy 11 year old with minimal health issues. He has adhd and is mildy hearing and vision impaired, but otherwise perfect :)

In all honesty, if he had severe mental or physical disabilities, Im pretty sure my choice would have been different.

DH and I have discussed our next pregnancy in depth because of my age (mid 30's) and have decided that we will terminate any pregnancy that has 'issues'.
It may sound completely selfish to others as we are undertaking IVF with a donor, but we have weighed up the strain it would place on our lives forever. I dont want to go into detail, but I have extensive experience with many people with disabilities in my family and extended family. Its not a life I want for me and my other children. I do not have the mental strength or capability to deal with it.
I struggle with the thought of having to leave a stranger or my other kids to care for him/her when DH and I pass. Or with the tjought of burying a child. It hurts to think about.

Hugs to you! Its not an easy choice, and the most important thing in my opinion is to decide if you can deal with it for the life expectancy of the child.

[siesmum]

Sadly I have been in your position before. My DH and I decided that we wouldnt want to continue if the results did come back as DS or anything else. But once we had the amnio and where waiting on the results (thankfully they came back all clear) I found my decision even harder, after seeing it bounce around inside me.
My DH still wanted to go ahead with what we had planned but I found myself questioning our decision. Instead to fill the time waiting for the results to come back I planned a trip to Italy incase we got bad news, doing that distracted me from reality.
As I mentioned our results came back ok. and I do worry that we will have to go through it all again when we have another baby. I still think we would choose the same option not to continue if we did have to go through it again.
I do sometimes feel guilty for my decision but it was the best option for us.
Sorry for the ramble I hope it helps always happy to answer any other questions. Good luck

[MsTruth]

I have not been in your position but my cousin has a daughter with DS and my mum was a special needs education assistant and some of her students had DS and stayed over at our house because they became friends with my family.

Based on the above I can say that children with DS are some of the most loving children you will ever meet. Yes DS brings with it certain medical concerns but my understanding is that there is a wide spectrum of where a child may sit in terms of how the syndrome affects them.

So many advances have been made in respect to many medical conditions and DS is no exception. Many adults who have DS go to mainstream schools, have careers, have relationships and have children of their own just like people without the syndrome do.

Having DS may mean that life is a bit harder, maybe a lot harder sometimes but it does not mean no quality of life.

I am not trying to make you feel guilty about considering your options but just wanted to say what I have observed with my cousin and my mum.

[krystallxx]

I haven't been in ur position so nor much help but I myself would do all the research and find out everything I could before making the choice .
I had a termination when I was 17 and I can say I am happy and content with the choice I made but I did take my time and really considered what I was doing...
You need to be 100% comfortable with ur choice.

[ChangedMyMind]

Thank you all for your input, really appreciate it.

I havent made a definite decision either way but I have started to do a lot of research for both options. While a termination is a quick easy solution, perhaps in the back of my mind I'll always carry that "what if" reminder.

I know the attitude toward people with DS has changed drastically over the years and there is so much support available, but those support networks aren't living with you 24/7 but the condition is.

I think my issue with having a DS child is that I have always been an incredibly independent person doing my own thing and travelling all over the world. And thats what I want for my child. I was saying to my partner yesterday I want my child to be another George Negus in terms of travelling all over the world and opening people's eyes. I left home at 15 and have lived all over Australia and the world on my own and most of that period having children was never part of the equation because of the restrictions on your independence. Once I made the decision to have children I wanted them to have the same sort of free spirit and pictured taking them to other countries to share the cultures and beliefs of other races. I also spent a lot of time in hospital having multiple surgeries following a near-fatal car accident a few years ago and i would never want anyone to have to go through constant medical treatment and that sort of thing, and looking up information on DS they seem to have a higher incidence of things like hearing impairment, heart conditions, leukemia and other health problems. So to have a child with DS goes against those 2 major things.

On the other hand, I want to hold a baby in my arms, I want to see a child grow and develop, and I would like to think I'm probably one of the most non-discriminatory people I know and I want my child to have every option available to it. And while there are varying degrees of DS, they cant tell you ahead of time how severe it will be.

And as much as most people dont want to admit it, I am concerned with how other people will think. I dont want people to look down on my child or to feel sorry for either of us but there are a lot of narrow-minded people out there that do. My mother used to help look after kids at the "Special School" (that's what it was called in those days) when I was about 5 or 6 and I remember my grandmother having a heart attack and telling my mother that I shouldnt because I might catch it off them. Now we all know thats not true but some people think like that.

[MsTruth]

Maybe the role of your child, should he or she have DS, is to still travel the world and promote the fact that people with DS can have all the things in life that those without DS do and that the stigma is wrong?

Just another way to look at it what you have just posted.

Maybe the first step is to do an amnio test to see if DS is diasgnosed. You could be researching and stressing for no reason.

[mattsmel]

wanted to share a link with you of a birth story that has stayed with me since the day I read it!
http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

Thank you, MRJB!! I just wanted to say that this story was so beautiful and moving, I love the part about Kelle's daughter teaching her what unconditional love was. Such raw emotion and so honest.

I think this story will stay with me too, thank you for sharing it :)

To ChangedMyMind - please try to stay positive :hugs: I agree with what Nat278 said, there is a much higher chance that your bub doesn't have DS. But I do understand where you're coming from, and nobody will judge you for your final decision. Wishing you all the best!

[MRJB]

I know - I read it again after posting it and cried again! That bit always gets to me. There is also a beautiful video on there for the foundation and Nella's story, but I didn't want to post too much.

[TrulyBlessed]

I was in your shoes 20 months ago. Our risk was 1:2 for T21 & 1:4 for T13/18.

My husband had always said he'd want me to terminate if there was something wrong. But when we were actually faced with this scenario it's a totally new ball game isn't it. In the end we decided we'd let nature choice for us so at 15w5d at a routine antinatal appt we found out our DS had passed away a day or 2 earlier.

In the end I could not make the decision & I'm glad nature took that decision away from me as I was tormenting myself with the fact he would never have a quality of life but how do you make the choice.

I just wanted you to know though I have no words of wisdom I have loads of empathy for what you are facing and here if you need a shoulder that's on the outter to talk to.

Sending my love at this time xoxo

[ChangedMyMind]

I am terribly sorry you are going through this. I have no advice but wanted to share a link with you of a birth story that has stayed with me since the day I read it! There are more entries on her blog as time went by and she has since started a DS foundation!

It's truly beautiful and might give you some hope, should you be faced with the decision you are dreading.

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

I just want to send you the BIGGEST thank you, this story and this lady have given me more than any research site I've looked at. This mother is truly inspirational and I really think she's helped me come to a decision. I cant thank you enough for pointing me in this direction. :hugs:

[ChangedMyMind]

I was in your shoes 20 months ago. Our risk was 1:2 for T21 & 1:4 for T13/18.

My husband had always said he'd want me to terminate if there was something wrong. But when we were actually faced with this scenario it's a totally new ball game isn't it. In the end we decided we'd let nature choice for us so at 15w5d at a routine antinatal appt we found out our DS had passed away a day or 2 earlier.

In the end I could not make the decision & I'm glad nature took that decision away from me as I was tormenting myself with the fact he would never have a quality of life but how do you make the choice.

I just wanted you to know though I have no words of wisdom I have loads of empathy for what you are facing and here if you need a shoulder that's on the outter to talk to.

Sending my love at this time xoxo

THANK YOU SOOOOO MUCH.
Most of the other stories I've read on here have been about women with odds like 1:200 or 1:150 and while I understand their anxiety I feel like screaming "see how you feel when your odds are a hundred times worse!!!" :hair:

I know we dont have a definitive answer yet but I've kinda accepted that we're not going to be one that beats the odds. We're having a CVS on Saturday morning but I'm almost reluctant to go through it all now, its hard enough to accept the first time let alone a second time. It's funny you should say about the decision being taken out of your hands because thats the exact comment I said to my partner about the risk of miscarriage having the CVS, that perhaps fate will be the deciding factor and the decision taken out of our hands. It cant be any easier losing a child at any stage but to know that at least they wont have a difficult life is some consolation.

I just feel like I've failed at what is probably the most important time in a woman's life, I feel like I've failed my partner and I've failed my baby.

I just want to thank you so much, you dont know how much comfort you have been, I only hope that one day I can pay it forward to someone else in distress.

Thank you.:hugs:

[MyFourCubs]

:hugs::hugs::hugs: to you. Fox in Socks has a little girl with DS- she is beautiful. (Both Fox and her little girl, lol.)

I can relate somewhat- we had a serious abnormality picked up at our 20 week scan. We were advised to have an amnio and potentially a termination- I couldn't bring myself to even risk the amnio so I knew I couldn't terminate the pregnancy. I already have a special needs child- my Ds has autism and I suppose he is an example of many disabilities that cannot be dx in utero. Had we been able to predict that he would have autism (back when we had no experience with kids with special needs) I don't like to think what my reaction would have been. However we were thrown into it unsuspectingly and he is now our beautiful, clever loving 5 year old boy and we wouldn't trade him for the world. Hence when the possibility of disability was raised with our ds2 we didn't hesitate to continue the pregnancy.

You will not be alone in whatever you decide, that is for sure.:hugs::hugs::hugs::hugs::hugs:

[MyFourCubs]

I just read your last post- honey you haven't failed!!!!! Not at all!!! This bub has a loving, intelligent, compassionate mother who will do what is best for her bub and for her family. If disability was a sign of failure than a lot of us had better go throw in the towel.:)

Don't be so hard on yourself, as sh!tty as it sounds, these things just "happen" and we deal with them the best that we can.:hugs:

[MRJB]

I just want to send you the BIGGEST thank you, this story and this lady have given me more than any research site I've looked at. This mother is truly inspirational and I really think she's helped me come to a decision. I cant thank you enough for pointing me in this direction. :hugs:


I am so glad it's given you the hope you need! It's one of the most beautiful stories I have ever read and I have learnt so much from it that I can apply to many aspects of life.


It's not an easy situation to be in but to know people have walked in your steps before and have not only pulled through but have an amazing life because of it is a great motivation.

I wish you all the best :)

[TrulyBlessed]

Sweetie you haven't failed at all. Life throws us really ****ty hands some times (it's what I keep telling myself to stay sane).

No one will look down on you for making the right choice for you, your DH & baby. There is never a right or wrong choice for everyone just a choice you make that is right for you and your family.

As much as it sucks go through with the CVS. As then you will have more definite answers to make an informed decision for you.

ATM you are just dealing with odds. Sometimes those odds are wrong too. My DD2 is proof of that (40-45% chance of survival at birth & now 8 months).

If you're unsure get as much info as you can before making your choice.

It is not an easier road & the unknown is the worst as are the what ifs.