Pregnant with a down Syndrome Child

Updated on December 29, 2006
S.S. asks from Helena, MT
14 answers

I am new to this site and was wondering if anyone had any advice on having a down syndrome child with a heart defect. I am due at the end of this month and am excited and scared on the arrival of my new baby. I have looked up information on the website about the disorder and really haven't gotten any testimonals on what children with downs are really like as an INFANT. Is there any sites that anyone can suggest reading. Thank you for your help

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So What Happened?

I finally had her on September 21, 2006. She has the best personality. I have high hopes that she will be more awesome to care for in the future months. I appreciate all the responses and advice you all have given me.
Another update on my daughter: She is so wonderful. She is smiling now and has developed her own personality. She will be having heart surgery in Salt Lake City on Jan 18, 2007 to fix her heart defect. She has a "AV CANAL DEFECT" and it is only fixable through surgery. I ask that our friends and family keep us in your prayers. Thanks for everything

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B.F.

answers from Las Vegas on

Dear S.,
You might also find help at NEIS (Nevada Early Intervention Services). Call them at ###-###-####.
B.

1 mom found this helpful

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C.

answers from Omaha on

Dear S.,

Congratulations on your upcoming arrival! Have you asked your OB about support groups for parents of children with Down Syndrome? I remember when I was pregnant and taking all of the tests that my midwife mentioned that there were support groups out there. I'm a librarian so I did a quick web search to see if I could find one, and I found this information:

Omaha Down Syndrome Parents Network
5009 Izard Street
Omaha, NE 68132
Phone: ###-###-####
E-mail: [email protected]____.com

Maybe this could put you in touch with some other parents who can share their experiences with you.

Also, as a librarian, I recommend visiting your public library and finding out if there are good books on down syndrome that might contain chapters on infants. Sometimes that web just isn't the best or easiest place to find info.

Good luck and again, congratulations!
C.

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M.A.

answers from Lincoln on

I’m 28 years old when I was 19 I had my son Kaycee. When I was told he had Down syndrome I was angry sad confused ….I had a hard time finding anyone that was close to my age that had a child with down syndrome…I did a lot of searching on the internet and I found a group on msn (see link below) that really helped me sort through all the feeling I was having. I got Kaycee involved right away with Lincoln Public Schools. A teacher would come to the house once a week to work with Kaycee, me and with anyone that wanted to be involved. My family helped in raising Kaycee until he was 2 years old. That’s when He started Early Childhood Special Education. I truly believe in early intervention!!! Kaycee is in 3rd grade.

Down Syndrome a whole new world (the MSN Group)
[email protected]____.com
Im not as involved with the group as I used to be but its very laid back. I suggest that after applying to be a member get on the message board and go through some of the previous posts. Every newborn baby is different down syndrome or not...

Down syndrome Association for families - Lincoln
http://www.dsafnebraska.org
Some of the web site is under construction but they have lots of links to local and national organizations

M.

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M.

answers from Reno on

Hi S.,
I have a co-worker who has a down's child. They are part of a parent support group. I think they could point you towards some solid advice.
Roy ###-###-#### days.

Best of luck to you and your family. Love will endure. : )

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V.J.

answers from Portland on

hi
first off congrats! for the baby on the way. I am a mom with a 3 1/2 yr old special needs boy with a nueromuscular syndrome that has yet to be diagnosed. I did not know there was anything wrong until he was 6 months old. I envy you for choosing to bring this beautiful child into this world. you will have your ups and downs...but he/she will be your biggest joy when you finally get to hold that incredible life. I have had 2 friends that have downs children. they are both in Los angeles. There is a national downs syndrome website -they have an enormous amount of info including, seminars, annual gettogethers etc. you can also try the library. Downs is a more common syndrome these days - much more info out there. I hope all goes well for you....if you ever need to chat - I am a good shoulder to lean on - or so my friends say....take care of you and that beautiful baby .....
V.

G.C.

answers from Reno on

I've been watching children scence the age of 11. I lived with my grandmother who ran a childcare center and I would watch the children in the outside play area during the summers. From there I was able to learn a lot and started to watch children at there homes for the summer, to save up for school cloths. I watched a down syndrome girl one summer. She was so beautiful. She was just a baby and acted like any other child. The only thing was that I had to watch what she ate. She couldn't have sweets. The sweets would up set her stomach. I later went to college for child development and even became a Nanny. Now I'm a stay home mom and have three children of my own. Sorry I have no web sites to refer you to. I would definitely do research on this and hope the best for you.

G.

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M.B.

answers from Phoenix on

Hi S.,
My name is M. & CONGRATULATIONS!!! I have a good friend that has a child that was born a downs baby. Her son is 4 years now and is doing great.
She was so lost & scared at the same time. She did most of her research online through webmd.com. They were very open & anwsered all of her qestions. She also did a lot of research through the local library.
Babies & Children with Downs are very Smart, Intelligent Thay will surprise you. Babies & children with Downs are very Loving too. I currently live in Springfield now. My friend lives in Arizona and there is not a week that goes by that I don't talk to my friends son on the phone and laugh.If I don't talk to him then my week isn't right. He seems to always keep a smile on my face....
Good luck.
M. .B.

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J.L.

answers from Sioux Falls on

Try finding an agency in your area that deals with special needs kids. I know there are a few here in Sioux Falls that have been very helpful. Also, once your child is born, try to immediately get in touch with Early Intervention. They'll help from birth on up.

Have you talked to your older child's pediatrician yet? I'm sure they know what resources are available in your area.

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W.V.

answers from Portland on

CONGRATULATIONS! I worked with many children with downs, my baby cousin also had it. They are sweet and loving, they are truely special and you should feel blessed that God has given you this amazing gift. It sounds like you do feel blessed and just let the rest come naturally, you will know what to do. I wish I had some sites for you! I USED TO WORK ON THE EAST COAST FOR EASTER SEALS, YOU COULD CONTACT THEM AS WELL! GOOD LUCK AND GOD BLESS YOUR FAMILY!!!!!

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L.S.

answers from Missoula on

Hi S.,
My niece was born Downs and with heart defects. She was the most loving child ever. She was our special child, with each and every smile she warmed our hearts.

I don't have any sites for you to go with, but I wanted to tell you to just love your DS child as God is giving you this gift because he trust you to love and care for this child.

I have taken care of DS as adults and they are so sweet, funny, playful they are all just so wonderful. 2 of the guys were 65 and 67 years old.

Good luck and Congratulations
God Bless
L.

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S.M.

answers from Omaha on

First of all, I just wanted to say congratulations. My sister-in-law was born with down syndrome. I just want you to know that she is (like most DS children) very very affectionate. I can't really help much. I wanted to let you know to call 211, that is a part of United way and they can help you get in touch with the people that can help you.

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S.Z.

answers from Salt Lake City on

Hello S.,
Congratulations on your little one on the way. I am sure it is all very exciting and scary at the same time knowing your child has Down Syndrome.

My DS boy is almost 13 years old. Although he does not have a heart defect, he has many other health issues and disabilities.

My advice to you would be to be sure and take advantage of all the early intervention programs available. I don't know what your income level is, but get him/her a SS# immediately after he is born, and see if he qualifies for medicaid. Medical bills can be overwhelming.

Most importantly grief the loss of the perfect child that you had expected to have. It's ok to be sad about that. Your child will be wonderful in so many ways, but grieving is an important and healthy emotion. I did not know I was having a DS child. It was quite a shock to me.

I read a book called "Expecting Adam" by Martha Beck. It is her experience with her pregnancy with Adam; her DS boy. I would recommend it.
Good luck to you. Please feel free to e-mail me anytime. I too will see what other info I can find for you.

Take care,
S.

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J.

answers from Portland on

Hi S.! I don't have the personal experience you're looking for, but I asked my good friend if she had any resources at her fingertips (she's going to school to be an advocate and support for parents expecting a child with special needs) and she just sent me all of the following information. I hope it will be helpful to you. You are so smart to try to get as much information as you can. Your child is lucky to have you.

Best wishes to you!

J.

playgroup for kids birth-5 with down syndrome, their siblings, and families here in portland: http://groups.yahoo.com/group/dsplaygroup/

There is an amazing book called “Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic” by Martha Beck. In this book, Ms. Beck tells her story of finding out she was expecting a child with Down Syndrome and all of the challenges and gifts and sadness and joy she experienced during her pregnancy and the birth/life of her son. It is a beautiful book. I looked all over my house for it but I must have loaned it out or I would send it along.

Also, as a parent, you can refer your child for early intervention services even before birth. Usually, at that point, a specialist will get in touch with you and talk about what sorts of support you would like and then will provide home visits and resources, and information, contact w/ other professionals at whatever rate and intensity the family would like. In Multnomah County, you can contact Multnomah Early Childhood Program (MECP) @ ###-###-#### (MECP is a division of the Multnomah Education Service District) In other counties/states, you can contact your Education Service District to make a referral and/or talk to someone about what services are available.

I put together a list of resources for both children with Down Syndrome and with health issues due to mom’s report of a heart condition, which occurs in about 50% of kiddos born with Down Syndrome.

Please let me know if I can do anything else! J

www.nads.org National Association of Down Syndrome provides counseling and support to families of children newly diagnosed w/ this syndrome. Also advocates for the rights of individuals w/ this syndrome and provides news related to this disorder.

Oregon Parent & Training Information Center
Their mission is to educate and support parents, families, and professionals in building partnerships that meet the needs of children and youth with disabilities ages birth – 26.
1-888-505-2673
www.orpti.org

www.thearc.org Advocates for the rights of individuals with cognitive disabilities. Also works to ensure that children receive appropriate education and health care.

www.bravekids.org

www.childrensdisabilities.info articles and resources

www.php.com (parents helping parents) family resource center for kiddos with special needs

www.lehman.cuny.edu/faculty/jfleitas/bandaides website filled with information and ideas and inspiration regarding children with chronic health issues

National Information Clearinghouse for Infants with Disabilities and Life-Threatening Conditions
The NIC serves family members, health care providers, and social service professionals.You can also get information about Parent support and training, community services/resources, early intervention resources, financial assistance resources, protection and advocacy resources, child protective services, special needs adoption, and other disability related information. NIC also publishes fact sheets and bibliographies. Call for a publications list. NIC is a joint program of the Center for Developmental Disabilities and the Association for the Care of Children's Health (ACCH) They can be reached at 1-800-922-9234, ext 201, voice and TTY, Monday through Friday, 9am - 5pm ET.

http://www.nas.com/downsyn/welcome.html Written by parents of children with Down Syndrome for parents expecting a child with DS.

http://www.nas.com/downsyn/donations.html more info for parents; essays written by other parents

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D.O.

answers from Chico on

Congratulations on the birth of yoru daughter ! I am sure by now you are madly in love with her. Give us an update.

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