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Pregnant with twins - one newly diagnosed with Down Syndrome


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Old 08-13-2017, 11:06 AM   #1
tmaxwell
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Pregnant with twins - one newly diagnosed with Down Syndrome

Hi there. I am 39 years old, have 4 kids and pregnant with twins, a boy and a girl. The boy (would be my husband's only biological son) was recently diagnosed with Down Syndrome via Amniocentesis. I have had a positive outlook on the issue from about 30 minutes after we suspected it, but my husband has not, and wants to terminate. But before you jump all over him for how cruel that is, please know that I'm trying my hardest to seek as much information as possible to make the best decision for our family. His concern is not the younger years, his concern is adulthood for our boy. Since we aren't spring chickens anymore, we are afraid that when we are gone, this boy will still need full time care, and my husband does not want to burden our other children with this task. I understand that. However, I am seeking real life, and HONEST, feedback from people who have been through it. I've read all the threads regarding how awesome these kids can be and how it's been a blessing to have baby with Down Syndrome. What I'd like to find, are the people who have been through the baby stage, been through adolescence, and are experiencing their child with Down Syndrome as an adult. I'd like to hear all the bad, along with the good. I am one that appreciates honesty over any sugar coated story. The more upfront and honest, the better. Thank you!!!

 
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Old 08-13-2017, 11:22 AM   #2
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Re: Pregnant with twins - one newly diagnosed with Down Syndrome

I've not been through it because we chose to not have children. I just want to it's sadness I have that you are having to go through the emotional reality decision making of your future.

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Last edited by quincy; 08-13-2017 at 11:23 AM.

 
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Old 08-13-2017, 12:10 PM   #3
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Re: Pregnant with twins - one newly diagnosed with Down Syndrome

As someone who grew up with an uncle who had Down Syndrome (4 years older than I), I can offer my perspective. To me, it was a blessing to have him in my life. they are the most loving and happy people!!! Back then, their life span was not nearly as long as it is now and many live into their 40's and more. My uncle died at 22.

One thing you won't know till after he is born is how severe his case may be. That can drive many of your decisions. My best advice is to talk with your pediatrician and your local ARC chapter for resources in your area. There are many options - and many do not require unlimited resources on your part. I hope you feel as blessed by him and I did by my uncle

 
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Old 08-13-2017, 02:54 PM   #4
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Re: Pregnant with twins - one newly diagnosed with Down Syndrome

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Originally Posted by Titchou View Post
As someone who grew up with an uncle who had Down Syndrome (4 years older than I), I can offer my perspective. To me, it was a blessing to have him in my life. they are the most loving and happy people!!! Back then, their life span was not nearly as long as it is now and many live into their 40's and more. My uncle died at 22.

One thing you won't know till after he is born is how severe his case may be. That can drive many of your decisions. My best advice is to talk with your pediatrician and your local ARC chapter for resources in your area. There are many options - and many do not require unlimited resources on your part. I hope you feel as blessed by him and I did by my uncle
I appreciate your reply and perspective. I'm wondering what your grandparent's went through to care for him, if that in fact is who cared for him. I have no doubt that every person with Down Syndrome has something to contribute to society and brings a ton of joy to the people in their lives, but I also know that the parents must be stressed beyond belief with the issues that come along with it. Let me know if you have any insight into their struggles as well. Thank you, again, I appreciate that.

 
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Old 08-13-2017, 04:35 PM   #5
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Re: Pregnant with twins - one newly diagnosed with Down Syndrome

I just want to offer my blessings to you both. I can certainly understand your husband's feelings on this.

My next door neighbor growing up went through exactly what you are going through. She had twins, a boy and a girl and wasn't tested. The boy was dx with Downs right after his birth. My neighbor was 31 years old when this happened. I was only 9. I grew up next door to this family and although I moved away when I was 18 years old, both my mother and I have kept in touch with the family.

Fast forward almost 35 years. My old neighbor has never had a vacation - she has never been able to work. She and her husband split up when he was 14 years old from all the stress that this caused the family. His twin sister is now 34 years old and married with a baby of her own. She moved across the country to get away from her brother and her mother. The mother and son live in a very small apartment which is subsidized housing in a big city. She is the most unhappy person I have ever met.

This decision you are making is one which really doesnt have a solid answer. Unless you have the money to provide for him once you are not able to do so any longer, you really cannot count on another sibling to take on this responsibility. It is true that Downs children live to be adults and some can be independent to a certain extent, but not all are and not very many , even at the best of times, can survive on their own without someone checking in regularly. It would be one heck of a burden to ask of your other children.

Your husband may be very wise to be considering this...as difficult as it may be. I am so sorry that you have to make this decision.
God Bless.
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Old 08-13-2017, 06:24 PM   #6
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Re: Pregnant with twins - one newly diagnosed with Down Syndrome

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Originally Posted by MSNik View Post
I just want to offer my blessings to you both. I can certainly understand your husband's feelings on this.

My next door neighbor growing up went through exactly what you are going through. She had twins, a boy and a girl and wasn't tested. The boy was dx with Downs right after his birth. My neighbor was 31 years old when this happened. I was only 9. I grew up next door to this family and although I moved away when I was 18 years old, both my mother and I have kept in touch with the family.

Fast forward almost 35 years. My old neighbor has never had a vacation - she has never been able to work. She and her husband split up when he was 14 years old from all the stress that this caused the family. His twin sister is now 34 years old and married with a baby of her own. She moved across the country to get away from her brother and her mother. The mother and son live in a very small apartment which is subsidized housing in a big city. She is the most unhappy person I have ever met.

This decision you are making is one which really doesnt have a solid answer. Unless you have the money to provide for him once you are not able to do so any longer, you really cannot count on another sibling to take on this responsibility. It is true that Downs children live to be adults and some can be independent to a certain extent, but not all are and not very many , even at the best of times, can survive on their own without someone checking in regularly. It would be one heck of a burden to ask of your other children.

Your husband may be very wise to be considering this...as difficult as it may be. I am so sorry that you have to make this decision.
God Bless.
Thank you for that honesty. I really only see a ton of sugar coated supporters that only say "it's tough, but it's so wonderful!", so I appreciate you telling me how truly hard it is in so many different ways, including adulthood for the siblings and now a dissolved family. I think he is very concerned about our family later on in life, because we really don't see much online about it when they get older. It seems like no one wants to talk about that. They only want to talk about how cute and happy the babies and kids are, and I want to make sure my family isn't neglected, and put in a position of hardship. Thanks again, I appreciate you.

 
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Old 08-14-2017, 04:03 AM   #7
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Re: Pregnant with twins - one newly diagnosed with Down Syndrome

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Originally Posted by tmaxwell View Post
I appreciate your reply and perspective. I'm wondering what your grandparent's went through to care for him, if that in fact is who cared for him. I have no doubt that every person with Down Syndrome has something to contribute to society and brings a ton of joy to the people in their lives, but I also know that the parents must be stressed beyond belief with the issues that come along with it. Let me know if you have any insight into their struggles as well. Thank you, again, I appreciate that.

The resources available now for such things as group homes, etc were not in existence when my uncle was alive. That is why I suggested your local ARC chapter ,etc to investigate what is available when a family can no longer care for the child. My uncle died in 1965 so their experience with care has no relevance today. I have a group home in my neighborhood and know of several in my area that are excellent and no cost to the family, if there is no family left.

 
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