I'm 4 months pregnant and just got the confirmation the baby is Down's. We have a healthy 2.5 year old. All we wanted was a sibling for her and now we are scared to death not knowing what the future holds and how to make the best decision for our family. I'm 43 and may not be able to concieve again (took over 1 year this time).
Would really appreciate hearing from anyone who has been in our shoes...regardless of the decisions you took. We are based in HK and I know that there is not a great support system for special needs kids here, either in the public or private sector.
Thanks so much.
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We have not been exactly in your shoes but we did have a discussion about Down's and other problems before getting pregnant. The decision we took was to terminate the pregnancy if we were given a diagnosis such as yours.
Once we were more or less in your situation but that fetus died. Guess nature took matters in its own hands. Since then we have had two beautiful and healthy baby girls.
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cd
18 yrs ago
Sorry to hear your news, it must be a huge shock for you. I have a severely disabled child (not Downs), that we have been bringing up in HK since he was 6. Things have improved greatly here in that time, there is a lot more help and support groups available here than there used to be. I think you should really try and find other parents with Downs kids to contact, so you can speak to them and find out exactly how life will be. I would suggest you contact The Sarah Roe school for possible contacts as there are several children there with Downs, unfortunately they have broken up today for the holidays. Maybe start with Watchdog or the Matilda hospital. I know one person who has a teenager with Downs, but I would have to ask them first if I can pass on their details.
We have found the public hospitals here excellent for our son, although the bedside manner often leaves something to be desired. And I know it doesn't help, but I actually said to my husband 2 days ago that I wish our son had Downs instead of what he has, because of all the Downs children I've met, they've all been happy, and had a good quality of life, and have all reached some degree of independance, some even studying at main stream school, something our son will never have. I know its not what you would want for your child, and if you decide to go ahead with the pregnancy, then you will have some greiving time for the child that you wish you should have had. But your child will still bring a lot into your life.
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cd - thank you very much for your candid reply. I would really like to speak with the people you mentioned that have a teenage Down's child. Can you ask them if I can contact them and then send me a message on AsiaExpat with a contact for them? We have been so emotional today.....not really knowing what to think. It's all just sinking in. Out of curiosity, do you have other healthy kids? One of our main concerns is how it will affect our older daughter's life, both now and in the long run, since it is likely we will pass and our kids, even with Down's, will outlive us. Is it fair to her to potentially make her responsible in some degree for a special needs sibling?
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http://www.hk-dsa.org.hk/
http://www.esf.edu.hk
http://www.cdchk.org
Here are 3 links the HK Down syndrome association, its in Chinese, but they have a Special Needs guide called FIRST STEP which you can download and read. It’s not bad in terms of giving the lay of the land in HK SEN. Also, you may go to ESF to read their SEN admissions criteria’s. For English speaking families there is the Child Development Centre at Matilda.
You may also be able to search Down Syndrome support sites to read chat room topics and ask her questions there.
Matilda International Hospital
Hong Kong
http://www.matilda.org
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lmcf
18 yrs ago
When in your position, nature took its course prior to us reaching a very difficult decision. However, a friend was faced with the same decision when my second child was born. She was having fraternal boy twins, and one was Down's. She decided to keep the pregnancy.
The boys are now 10 years old, and both are doing well. She always says that she is so glad she decided to keep them, and though the road has been different, it has still been wonderful. The Downs' boy is considered higher functioning, and was able to attend the special learning unit at Bradbury (ESF -- integrated to regular classrooms as possible), which she found to be very good. He reads, writes, play sports and participates in almost everything that his brother does. He is an extremely happy child, and would have been able to finish secondary school with ESF (diploma) which offers vocational training. However, they are leaving HK this summer, but not due to the education but rather for career. From my observation, having a sibling has been a real advantage for this boy.
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cd
18 yrs ago
To OP, yes I have 4 other extremely healthy kids.
My disabled son is my second child, so went on to have 3 more, much to the disgust of some people, who thought we were totally wrong to have had more. Sometimes now, I still wonder what if, our lives would be so much easier without him, but I live in fear of that day ever happening. To the outside world he doesn't really do anything, but when he smiles my heart melts. My other kids have all been wonderful with him, and haven't resented him at all, and I'm sure its made them more understanding of other people.
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dp
18 yrs ago
Fushingbayloo, my heart goes out to you. I'm not the mom of a DS child but we were told that our #2 was going to have a significant disability and were urged to consider termination. As it turned out, #2 was fine but we decided to continue the pregnancy even before we knew this. I understand your concern about how it would affect #1 but we thought the same as cd i.e. that it would actually make our #1 a more caring and understanding person. Also, I had some concern that if #1 ever found out that we terminated #2, it could seem that we were not prepared to accept a disabled child and I didn't know how that would affect #1's perception of unconditional parental love. Whatever your ultimate decision though, remember that it is the right one for your family situation and nobody else can know better or judge you for it - my very best wishes to you.
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my heart goes out to you too. I think the question to ask yourself and with your husband is whether it's having another CHILD, and a sibling for your elder one.... unconditionally, or you are expecting or wishing a healthy child (not Down's)
Ask yourself whether you can love this child unconditionally, without any resentment, or regrets, know that there will be a lot of challenges, but rewards as well. Ready that it's a road and path that is totally different from your first child.
If you can answer these questions with all YES, then I think you can consider keeping the baby. However, I think if any answer to these questions is a "no", then you might need to rethink with your husband. In my opinion, parents are the ones who will love and should love their children unconditionally. If you know you will have prejudice, resentment, possibly in any %..... then it's not going to be healthy for the child, and yourself, and your marriage, and your own health in raising a child with such conditions.
You have a lot to think about, all the best, and good luck.
Whatever decision you make, no one else will judge or should judge, but since you wrote in here for some advice and opinions, it's all for your reference.
All the best!
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I have friends who, like dp, were told their baby was down's syndrome before birth, but actually was not.
In terms of how a sibling may feel in the long run, my sister does have high-functioning Down's Syndrome, and she is absolutely the happiest, most loving person I know. She is a wonderful aunt to my son, and I would have certainly missed alot had she not been my sister. And like dp mentions, I'm sure I am a more compassionate person for being in contact with special needs people.
My sister loves music, animals, swimming, dancing and acting and rode horses growing up. People love her, she is sociable and easy to get along with. Even with down's syndrome, she is still her own person. She does live with my mother but enjoys cooking for them both (grilling fish, steak, boiled vegies and simple foods) and takes care of herself, writes and types and does community classes, and could probably live in a group house or such if she had help with finances etc. She will never earn a high salary but can do simple work (she's assisted with a kindy and helped at a cafe), she will never be an Olympic athlete but then neither will I. In terms of the joy she brings to society I'd wager she would outscore most people.
There are difficulties of course, as there can be with any child, but from my experience down's children are a "blessing in disguise". Please don't think you would be putting a burden on your first child, it may be just the opposite. Keep talking to people who have Down's children and get more information.
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Applepup - did your friends, who were told their baby was DS, actually have an amnio? How were they "told"? We had a quad screen that came back 4 out of 5 pos. for DS and then a high def. scan where 2 abnormalities were found, then the amnio, which came back positive.
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I'm sorry I don't know what specific tests they had, and I can't reach them during the summer. There was an article in Sunday's paper about Down's Syndrome, did you see it? It was about a new book called "Tuesday's Child" by Kathy Evans telling of her experiences: three children, the third with Down's.
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Yes, I saw it. Thank you.
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cd
18 yrs ago
To fushingbayloo,
How are you coping? Have you come to any decisions yet. I keep thinking about you, I can't find that persons e-mail at the moment, but at least you can talk to hshirley and have a real heart to heart.
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cd - thanks for asking. It has been an agonizing, heartbreaking few days. We have been grieving enormously - for the potential of the life that we will never know if we terminate and also for the hopes and dreams of our family life that we know will never occur if we continue on. We have not decided which path to take yet but are leaning toward one more than the other. I'd prefer to keep it personal at this time. The baby has structural defects in the heart and stomach and tomorrow we'll get another opinion on that with a new doctor. This is life changing, just being in these shoes. Most people, including me, never think it's going to happen to them, but life is not that simple or perfect.
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