Mild Down's Syndrome Baby

Updated on February 25, 2010
E.E. asks from Irving, TX
6 answers

Dear Mamas,

A friends baby was recently diagnosed at birth with mild down's syndrome. I would like to help her as much as possible and would love any of your advice as far as good websites, forums or support groups available. My friend strongly feels that her baby does not actually have down's syndrome as he is feeding very well (breastfed) and reacting the same way as her other two children when they were born..Are there any Mums out there with babies who have down's syndrome? Any advice would be wonderful to hear!
Thanking you in advance!!!

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So What Happened?

Dear Mamas,
Thank you so much for all your love and support on Down's Syndrome! You cannot imagine how much I appreciate all your advice and help! Thank you Mamapedia once again!!! Kisses to you allxxx

More Answers

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D.W.

answers from Indianapolis on

Down syndrome is a chromosomal disorder - if there is doubt, the diagnosis should be very easy. Most down syndrome is caused by an extra copy of Chromosome 21, but there are some other causes as shown in the May Clinic site listed below.

Here are some credible on-line resources that may help:
http://www.healthychildren.org/English/health-issues/cond...

http://www.mayoclinic.com/health/down-syndrome/DS00182

http://www.ndss.org/

http://children.webmd.com/tc/down-syndrome-topic-overview

Last night, on the Olympics, they showed a clip with Tom Brokaw regarding a snowboarder, Kevin Pearce, who'd been critically injured in a training run, and how having a 24 year-old Down Syndrome brother prepared the family for the patience required to help with his rehabilitation. Pretty powerful story:
http://www.nbcolympics.com/video/assetid=968d9b05-075e-42...

1 mom found this helpful
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I.G.

answers from Seattle on

Down syndrome is a genetic disorder that can only be confirmed with genetic testing. There are 3 varieties: simple trisomy 21 (every cell in the child's body has an extra copy of chromosome 21), mosaic trisomy 21 (a proportion of the cells has a third copy - only 2-4% of cases) and down syndrome due to translocation (the cells contain an extra portion of the chromosome 3-4% of cases).
It is in her best interest to get a proper diagnosis. Children with trisomy 21 can thrive and even become independent adults that lead relatively normal lives. Early intervention and support is key! Children that receive support from infancy can do VERY well.
She should speak to her pediatrician and get connected to a local support and intervention facility.
Good luck!

1 mom found this helpful

V.C.

answers from Dallas on

Hi E.,
What a great friend you are.
Early intervention services are free for children 0-3 years old. You might want to help her find a center new her.
I used to work as a therapist in Dallas. I had one little boy with Downs. He was precious and a favorite of everyone.
Your friend is grieving over the child she thought she wanted and didn't get. I think she will come around and see that this child is going to be a blessing for everyone who knows him.
Victoria

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M.B.

answers from Los Angeles on

First off there is no maybe when it comes to the diagnosis. Your friend is still trying to adjust and it wonderful she has a caring, supporting friend like you. May times at birth it is difficult to see the charcateristics of Down Syndrome. Have her get in touch with her local Regional Center, if she has not been reffered there yet. It's great to hear that he does not have the health issues that some babies are born with. She should seek reasources early to keep his development on track, but also treat him like her other kids. Support groups are wonderful but sometimes parents are not ready for those until down the line. Be patient, sometimes a person is not ready to take in so much information at one time because it's overwhelming. You are a good friend she is lucky to have you. Good luck.

1 mom found this helpful
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L.B.

answers from Dallas on

We have a 5-yr-old daughter with Down Syndrome who brings us joy every day. I know it was hard for us at first, simply because we didn't know what to expect for our daughter. Books & articles tell you many of the common traits & issues, but the good news is that, as with any child, each one is very unique and will have his/her own strengths and challenges. Our daughter does pretty well with gross motor skills, is very active and loves gymnastics, the playground, etc. She struggles more with fine motor skills & speech, but is making progress in both. She goes to kindergarten and spends more than half of each day in the "general" kinder class with her peers and the rest of the day working with a special ed teacher, aide or speech/occupational therapist. She's very outgoing, loves school and playing with the other children & the other kids seem to enjoy being with her, too.

It looks like you've already gotten a lot of advice about getting a definite diagnosis. I'd agree with the need to rule out any misdiagnoses first. If the child does have Down Syndrome, then have your friend contact Early Childhood Intervention (http://www.dars.state.tx.us/ecis/index.shtml) as they will typically provide in-home physical & speech therapy until age 3 when the school district takes over.

Overall, let your friend know that if her child does have Down Syndrome, there will be challenges, but there will be many more joys in their future. :o)

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G.B.

answers from Tulsa on

This is an example of what I'm talking about.

http://www.sujeet.com/

Down's Syndrome (DS) can be one of the most functional of all Developmental Disabilities (DD). A lot of DS kids grow up and have jobs, live on their own with minimal support, can get a long with just about anyone, and marry if they choose to, and any other thing they want out of life.

My neice is an adult with DS and works at a local University in the catering department, she has lived on her own in an apartment for some years, makes her own meals, plans her menu, does her own shopping, rides the bus or shuttle on her own, and her mom just helps her make her budget (Mom does check the checking account weekly to make sure nothing is amiss) and helps her to set goals and outcomes. I had one married couple I worked with and all I helped them do was make a plan for house cleaning. They hated it and refused to do it regularily. I had another consumer that had a beautiful little boy, he was perfectly normal and super smart. We had a helper for him when he started having regular homework and he had perfect attendence, good grades, and was always clean and well behaved. She knew how important it was for him to be at school everyday and on time.

I am a firm believer, and advocate, for the rights of people with Developmental Disabilities. I have over 12 years in the field working as a Habilitation Specialist, House Manager, Trainer, Case Manager, Trainer Trainer (I taught new employees how to do their jobs). My plan in College was to get at least a Master's in DD and be a Lobbyist for their rights. So many people with DD are pigeon holed and treated like they can't form solid thought by themselves.

I don't mean to be disrespectful or anything like that, it's a hard thing to come to terms with for a parent. Either this little baby has the genetic anomaly or not. This baby can act and look "normal" but still have the gene and the diagnosis.

There will be much support for this family, the school system's usually start kids with disabilities in school at 3, there are many agency's that provide services in the home from birth to school age, as the child gets older there will be more available to them. The mom will need to find an agency she feels comfortable with. We are a smallish town and within 50 miles of my town there are over 10 agencies providing services to individuals with DD. Some have been around since the 50's and some are less than a few years old.

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