Seeking Info on Down's Syndrome

Updated on May 06, 2008
S.B. asks from Lewisville, TX
15 answers

My sister is 19 weeks pregnant and just had a sonogram - the nuchal fold measurement came back as really high (7.5 compared to a normal 5) - Down's Syndrome - she did have an amnio done, and will get the definitive results from that in a week or so, but the doctor seems very certain. So I'm looking for some info - three-fold, really.

1. Has anyone had this diagnosis in pregnancy and NOT had a Down's Syndrome baby? (we're not hopeful on this, but you never know)
2. What resources are out there that are the best? I've been up half the night trying to find good websites and local resources (she's in another state), and I'm just not coming across anything real, which shocks, angers, and saddens me. (and has made me an immediate advocate for this cause)
3. If you have a child with Down's Syndrome, what is the best way to talk about it? My sister and I are close, and while I'd love to believe I can be the perfect sister in this situation, since I haven't been through it, I don't really know what to do / how to act. (besides rage against fate and cry uncontrollably)She already has a stepson with Cerebral Palsy, and she had severe trouble conceiving with a life threatening tubal pregnancy, partial hysterectomy, so this is her only shot at a child of her own, even without a disability.

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So What Happened?

I just wanted to take a minute to say how overwhelmed and grateful I am at all of your responses, both to my post and by private message. It is so encouraging to me that communities do exist where moms are simply there for each other. Thank you so much. I do plan on responding individually to everyone, but I wanted to put this out there, too. Thank you for making this such a great community and giving me the comfort I need through sage advice, a wealth of information, words of wisdom, and words of sympathy and empathy.

UPDATED 12/11/06: I'm finally getting back to posting about this - my sister has found out that her baby girl does not have Down's Syndrome - she instead has Turner's Syndrome. This is a very rare chromosomal disorder only affecting females - its main characteristics are short stature and no functioning reproductive organs. Of course, as with any disorder, severity varies from undetectable to life-altering. The most troubling part of this syndrome is how rare it is that the baby will be born and not die in utero. Over 95% miscarry in the first trimester. And of those that don't, approx. 70-80% die within the 2nd or 3rd trimester. So now we are dealing with a whole new set of worries and problems. She has seen a specialist who has reassured her that her little girl seems to be doing okay and he doesn't anticipate she will die. So now we are just focusing on prayer - God's will determines this outcome, not our wishes. Your stories and advice and words of comfort have been such a blessing to me. My heart goes out to all moms who have children dealing with special needs. I cannot imagine the emotional rollercoasters you go through on a daily basis. I am inspired by you, and have shared your stories with my sister. Different syndrome, but same feelings of love and commitment and determination. Thank you for sharing with me. I will attempt to return the favor whenever I can here on Mamasource.

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J.R.

answers from Dallas on

Please call me. I have a 15 month old Down Sydrome baby and live in DFW metroplex. ###-###-#### cell. I would really like to talk to you.

Jennifer

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D.W.

answers from Dallas on

Hi S.!
Google Dallas Down Syndrome Guild- for some reason I can't get the page to open. They are wonderful people. I have worked w/ them in my office when babies are diagnosed or new parents of Down's syndrome kiddos move to town. They can help answer your questions and probably help you find resources in your sisters town.

Here is a short essay you might find helpful too:
WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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D.B.

answers from Dallas on

try www.ndss.org that is the main Down Syndrome website. Maybe you can get some answers there. As you can see my son is 9 years old and functions on a 6 month level he is severly Autistic and Mentally Retarded. He's not been formally dx with MR but so severe with the Autism that he cannot even take an MR test therefore he would rate MR. There is a child in my son's class a little girl who has downs syndrome, I knew another little boy, the good thing is, they CAN learn. It may be a slow process, I really don't know that much about it, but this little girl looks maybe 4 or 5 and eats cereal with a spoon and drinks juice from a straw. My son can't even feed himself or drink from a straw or cup, only sippy cup. He can finger feed, remember 6 mo old. Anyway, if it does prove the baby turns out to have DS, pray, get informed, research, do all you can, with her already having another child with a disability, it will be hard on her. I have no family around myself. Just me my husband and my son. Thats it. So we get no help. No respite and its tiring. I can't imagine having 2. Goodluck.

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R.

answers from Dallas on

Hi! I have a son with Down syndrome and he's the best thing that's ever happened to me. Please contact me privately. I have a wealth of information for you. My son is 5 and I'm currently attending school to be an occupational therapist (inspired by him). I've coped with this issue by researching things constantly about DS and the more one knows, the less scary it all is. Also, the more one knows, the more intervention you can do early on so that the child can reach his/her full potential. [email protected]____.com

R.

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J.W.

answers from Dallas on

S., I guess I can't add much to what has already been said, but I hope it's reassuring to your family to know that having a child with Down Syndrome isn't the worse thing in the world, believe me. My daughter, Sophie, just turned 1 on Saturday and she is an absolute doll baby. Aside from her medical issues (she had open heart surgery at 4 months old and has a feeding tube for liquids) she has been the easiest baby and brings so much joy to our family (which includes an older sister who is 3).

I also did not know during my pregnancy that she had DS (despite the screenings and higher level ultrasounds). At first I was angry that it got missed but came to realize that had I known during the pregnancy, I would have worried and fretted like your sister is. My advice would actually be not to concern yourself too much with reading up on all the DS stuff until you know for sure. Like someone mentioned, your sister will be inundated with resources in her area and on a national level as well. I'm sure you want to be prepared, but there will be time for that once the baby is born. She's pregnant and doesn't need to be burdened with all the "what-ifs" right now. As her sister, just be there for her. Listen to her cry it out. Hug her when she needs it. Reassure her that everything will be alright. You are already helping her by reaching out like this. And that's wonderful.

While of course I wish my daughter didn't have DS, it truly isn't the end of the world. In fact, it has opened up a whole new world for us and we have met so many wonderful people (here's a shout out to all my friends with the DS Guild of Dallas!) And absolutely EVERYONE who comes in contact with Sophie thinks she hung the moon. She will have challenges, yes, and things move at a slower pace with her, but that's okay. She'll get there eventually. If you want to see pictures, visit her CaringBridge site at http://www.caringbridge.org/cb/inputSiteName.do?method=se...

Good luck and please keep us all posted on everything.

Hugs,
J.

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J.

answers from Dallas on

S.,
It looks like you got plenty of great responses to your concerns and questions. I just briefly looked over the answers and I did not see a resource known as Early Childhood Intervention. They work with children birth to their third birthday that have developmental delays. They can come to your sisters home as soon as the baby comes home and make sure they have all the resources they need in her area to help her with her child. They can also give therapy designed to help your sister know what to do with her child 24 hours a day when no one else is there to help her to increase the skills of her child, if there are developmental concerns. You can call 800-628-5115 in Texas and they can give you the contact number for your sisters area. There is one of these programs in every city in the United States. Even if she does not use their ongoing services they can make sure she has the resources she needs. Keep us informed about what the outcome is for your sister's baby. God gives us only what we can handle and, in my experience, he gives special children to only those special people who can appreciate what they bring to this world. God Bless you and your family. J.

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D.B.

answers from Dallas on

S.,
A friend emailed me a link to your message, I read it, read the responses, and it looks like you're getting a lot of great advice.

I have 5 children (13,8,6 and 4 year old twins - identical, both have Down Syndrome). We knew we were having twins, we did not know that they had DS. It was a shock. But there is good news, there are support groups everywhere.

More good news. There are countless inspirational children and adults with Down Syndrome. They grow, sit, crawl, walk, run, ride bikes, ride horses, swim, talk, read, learn, play ball, do all those things that kids do. And some, go to college, live on their own, even get married.

Feel free to contact me, I LOVE to talk about my kids!
~Daneen
[email protected]____.com

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I.

answers from Dallas on

Hi S., sorry, this is a long story…

I met my husband when we were 15, he was an only child. Shortly after we met, his mother got pregnant again, she was 39 years old. Did no testing, and my brother in law has Down. His name is Frits. My husband and I were “just friends” than, lived not close to each other, so I do not know much about the first year. (he was able to breastfeed). He is now 18 years old, and just spent 4 weeks over here together with my in laws (we’re from Europe). He can talk, but you have to know what he is talking about to understand him. He can write his name, and count to 10. It is sometimes painful to see that my oldest (now almost 5) knows all the letters of the alphabet, and knows 5+2=7 whilst Frits with his full grown body never can reach that level. My in laws are great people, they always invested a lot of time in Frits, keep stimulating him. Even now my Father in law sometimes tries new things with him, whilst Frits has reached his ceiling years ago. We love Frits a lot, every body does, he is easy going. But yes, he is mentally disabled. And yes, that’s not always easy, especially the first 10 years when you try to learn this child as much as possible.

I have known Frits his whole life. I do not want to offend somebody with what I’m going to say next. But my prayer always was: If we’re going to have a disabled child: please let it have Down. With someone with Down, everybody can see it is Down. So everybody knows more or less how to react, every waiter in the restaurants know he can not read his menu so his parents tell him what to order and than he tries to repeat it by himself. Everybody is patient with him. With an autistic kid, nobody can see it, so when you start talking to the kid and get a strange reaction people don’t know how to handle. People with Down are able to love you, and let you feel that. You know on forehand that he has a ceiling, that he can never live alone or go to a store to buy milk and bread. With a lot of other mental disabilities it is not that clear, and I think that’s much more difficult to accept. You keep on hoping: He will turn out “normal” if you teach him enough. With Down you have severe and less severe cases, so every case is different. I know a girl with down that functions as a 7 year old. Frits is just a big 3,5 or 4 year old. He is happy, he works in a kitchen in the Netherlands with a very patient boss.

I don’t know if it you or your sister helps to read this story. Sorry it is so long and sorry about my English. I can tell you more if you have questions. Just talk about it with your sister, tell her what you are feeling and ask what she is feeling. I hate it when I tell people: “my brother has Down” that they immediately change the subject. Talk about it, and read. The more you know what to expect, the better you are prepared. It will not be an easy road to go, but when it are “adults” it are mostly lovely, easy going people.
Because we’re not American I can not help you with websites etc.

Love, I.

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A.A.

answers from Dallas on

YES...I have a friend that had this diagnosis during pregnancy and did NOT have a downs baby.

I did not have any indicators and ended up with an autistic child...you never know what will be handed to you. However, I can say, in the past several years I have been very involved with special needs kids. There are different severities of having downs syn. If a downs child starts therapies early they can have a good life, it won't be easy, but it can happen. Another great website for special needs once the baby is born(IF it is in fact a spec needs child) is www.schwablearning.com.

I wish her the best of luck.

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A.S.

answers from Dallas on

My husband is a nurse and has done home health care for children and adualts with down's if you have any worries or questions i'm sure he would be more than happy to help..... A. [email protected]____.com

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J.V.

answers from Dallas on

S.,
I have a daughter Olivia 2 who has Down Syndrome and she is the joy and the best thing that has happened to me in life.
I did not know Olivia had Down Syndrom until I delivered and while it was tough to learn in the hospital, I saw this beautiful baby that needed me and that was enough to deal with it. She is healthy, walked at 15 months and now at almost 2 is happily in preschool at a school focusing on developing children with Down syndrome to get ready for school.

We all expect to have 'perfect' children but I can tell you my daughter has changed my perspective on life, happiness and frankly, made me a better more accepting person. There are many worse things to deal with than Down Syndrome and some of you may not know about for years, possibly teenage years, with 'perfect' children.

I have met some of the most wonderful parents through the Down Syndrome Guild and my daughter's preschool - The Rise School which focuses on development to get the children ready for public school. I visited that preschool when Olivia was 3 weeks old and it was the turning point for me. It made me realize with all those wonderful happy children, that this was Olivia's plan and my plan. Please look up both sites on the internet (riseschool.com)

The reality of life is that you never know what God has planned but I believe there is in fact a plan. There is no question I would rather that Olivia not have Down Syndrome but to not have Olivia in my life is unthinkable. She has touched everyone that meets her in the same way and she could not be more loved by our family and friends. It sounds like your sister has had to face some challenges but that may be her plan. Please feel free to have her or you contact me. That was one thing I wished I'd had earlier was the connection with other mothers who were in the same position as me. ([email protected]____.com)

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S.H.

answers from Dallas on

Wow S., I'm so very sorry to hear this. That is devestating news for your sister, I'm sure. While I don't personally have any first hand experience with DS, I have friends who do as my daughter seems to bond with them. I'd suggest you contact a good friend of mine (wonderful person!) Lisa Smith. She is involved with the Down Syndrom Guild locally.While she lost a son with DS in heart surgery at 4-months, she's very open to talking about it and helping support others, lead them, etc.

My two cents...I pray and hope that God will carry your sister through this with peace. We NEVER know the big plan. And from what I've seen with my friends that do have children with DS, it has changed WHO they are for the better. And they admit that.

Do call my friend Lisa Smith and tell her I gave you her number/e-mail. She can also put you in touch with the right people for the Down Syndrom Guild. My other friend is SOOOO busy now as a single mom and traveling the world (literally, she's in Turkey now) that it's best to see if she responds to this posting. I can always put you in touch if you really want more people to talk with.

Lisa Smith HM ###-###-#### or MB ###-###-####

Best to you and your sister.

S. Havens

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S.

answers from Dallas on

Hi S.,

Your sister is very fortunate to have such a dedicated sister. My first daughter had a similar diagnosis. She did not have DS.

I do work with children who have DS. The Down Syndrome Guild would serve as a great resource. They are a wonderful group of people, and may be able to offer some of the answers you seek.

I hope you find the answers you are seeking for your sister.

Best Regards,
S.

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A.H.

answers from Dallas on

Hi S.,
My heart goes out to you both. I had my son 17 months ago I was 35 and did all the tests and was told he was healthy!
Well when i gave birth, my son had down syndrome. I cannot tell you how shocked we were, it was heart wrenching. But we are lucky that he did not have major health issues, they checked him for everything. After a few weeks we started to get calls and information from the doctors about resources and support centers etc.. Once your nephew/niece is born she will get plenty of help, just pray that he/she does not have complicated health issues!
In the mean time there's a lot of information on the internet (www.ndss.org) that will give you resource link.
We are members of www.downsyndromedallas.org, they have been a great help. I'm sure there is support center where she lives.
We take each day at a time with our son, we know he is going to be slower than your average child, but he has been the best blessing to us and such an experience how you really look at life and every day people.
Please feel free to contact me if you need to
[email protected]____.com
good luck to you both.

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B.B.

answers from Dallas on

My granddaughter is Downs's Syndrome.I also worked in Special Education and I can tell you that these babies are the sweetest children I have ever had dealing with. My daughter refused any test to find out if her baby might be downs because she said it wouldn't matter anyway because she would love it no matter if she had downs or not. My Grand baby is a year old not. She acts a lot like other children.They are doing so much more for downs children than they used to. She did have to have open heart surgery at the age of two months but came through the surgery with flying colors. She gets therapy. They need to start them in a program starting with birth. We love Shyanne very much and don't threat her any different than we did our other Grandchildren.

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