Tested positive for DS

Kirbs2922 · November 2014

Yesterday we tested positive for DS. My husband and I were shocked. Having an amnio done in two weeks. I'm 32. This will be our third child. Just looking for some information. Dr said these blood tests are 99% accurate...

supersarah77 · November 2014

If you had non-invasive prenatal testing (NIPT), then yes, the statistic is 98-99% accuracy. I'm not sure what information you're looking for but I can only imagine how difficult it must be to wrap your head around this and my thoughts are with you and your family.

samiamagirl · November 2014

This must be a very shocking time for you and your family right now. My thoughts and prayers are with you all right now as you process this information.

beaseg · November 2014

Were you and your husband planning on this being your last baby? I was a nanny for a family that had one son. They got pregnant and had another, and even though the chances were low and they weren't really given a heads up, he had DS. Everyone that they knew that had kids with downs all recommended the same thing: don't stop having kids! But that was really hard. The mom had a lot of fear about having another child with special needs, and she was 34. She ended up having one more, a third boy- who was born typical. All three of the boys are thriving today. And we didn't realize until the third son was about 6 months old WHY everyone recommended to have another- the siblings just really HELP. The middle son (Chris) learned so much from both his brothers, and he had self esteem boosts from helping out a littler brother.

Also, you'll find LOTS of programs that are super awesome for people with DS. I live in a suburb outside of Chicago and there are programs for kids with downs that is kind of like "college" where they learn how to live on their own, cook, work, etc. A friend of mine's brother did it for several years and he LOVED it.

We have always been very active with Gigi's playhouse (my uncle has DS) and if you have one near you, look into it! It's an awesome program.

Also, grab some tissue and read this: https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html I love to keep up with her blog. Her daughter is just AMAZING.

I babysat Chris for a couple years before I moved from their area. He was awesome. Super silly kid, compassionate, innocent (but with the mischief streak you see in boys that comes with multiple brothers!), smart, creative, loving. A true blessing that has bonded his family so close together.

mpiemont · November 2014

Thinking of you as you process this information.

Poppy715 · November 2014

It's such a huge amount of information to recieve. I can't imagine. I used to nanny for a family of 4 and their smallest guy had downs. They adopted him at 3 weeks. I remember reading a book they had in their home about the journey, finding out their baby had ds and telling their family. They called the mother's sister and said they had news about the baby. She told her that the baby had ds. The sister let out her breath in a huge sigh of relief. She said I thought you were calling with terrible news, I was so worried. The author of the book said that moment put the diagnoses into perspective for her. It wasn't the news they had hoped for but baby was doing well.

DS kids need lots of love and extra care. There's no denying that. But try and not let the unknown overwhelm you. Many of the DS kids I've encountered are the kindest most loving humans on earth. Do your research and try to be ready when the time comes to deliver. Take it a day at a time and think about possibly going to a counselor if you are anxious about the future. I wish your family and that LO the very best. No matter what you will love your baby more than anything you've set your eyes on. Take care.

KellyFM522 · November 2014

Sending your family lots of love! I'm sure you guys are still trying to wrap your heads around this information. But some of the strongest and most loving families I know have a child with special needs. Our aunt has two boys with Fragile X out of their 5 kids and they are the glue and light of that family. This baby will bless you in ways you didn't think was possible. I am the primary president in our church and I have the sweetest boy with DS, he turns me to mush by his sweet and profound statements. I got some training from leaders to teach kids with special needs and it changed me for the better. Please keep us informed and updated with your status, research and everything. I think we can all be better educated in the special needs category. ((Creepy internet hugs))

Unknown · November 2014

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EntropicEpona · November 2014

Thinking about you and your family as you process this, and we're here for any support you need. My step-aunt had DS, and led a perfectly normal and wonderful life. Lots of love, sweetheart.

tori41612 · November 2014

T&Ps are being sent your way as you process this.

ElleMuffin · November 2014

I don't know much about DS but I do have 3 boys with Autism. Having a child with special needs can be incredibly challenging, but it is incredibly rewarding. My boys are amazing and I wouldn't change a thing about them. My prayers are with you and your family and I am hopeful that whatever the future holds you'll find happiness : )

TBsquared · November 2014

I hope you find some peace in the news you've received. I know many kids/adults with DS and they are just some of the most wonderful people I've had the pleasure of meeting. This child will open your eyes to a whole
New world.

craftylady29 · November 2014

Thinking of you and your family.

climbermomma · November 2014

I cannot imagine what you are dealing with right now, I don't have any stories at all, I actually don't know anyone close with D's but the stories above are amazing. Keep us posted and I know we will all be thinking of you and your family.

jeep1019 · November 2014

T & Ps to you and your family. I'm glad you have this board available for support at this difficult time.

swinslow2 · November 2014

My mom was told 100 percent i had DS. I can tell you i do not and tho i know it doesnt always turn out that way. There are blessings here regardless. My husband and I arent doing any testing because i've had 2 miscarriages and the way we look at it is a happy baby DS or not is better than no baby. I read this article and cried. Ive posted this once already but after reading it my husband and i had an hour long conversation about all the friends and one family member we have or have known with DS and we spent so much time laughing at the joy we were brought by these ppl. Whether it was a classmate, neighborhood friend or aunt but by the end of the conversation i realized not one negative or sad thing came up just pure joy and an immense amount of happy memories. We're praying for you and your family but know God doesnt give you more than you can handle and He knows exactly what he's doing

https://themighty.com/2014/11/when-a-cashier-reminded-me-my-son-has-down-syndrome/

suszbaker · November 2014

I am keeping you and your family in my thoughts. There are so many loving, thriving, fantastic DS children that I have encountered. They bring such joy to so many people.....a lot of extra loving and care, but such precious gifts.

Lezzie82 · November 2014

God doesn't give special kids to non special people. He or she will be a beautiful gift for God and i guarantee it will change everything you ever thought you knew about love, life and happiness.

You all are in my prayers but keep your chin up. This is NOT a negative thing if you don't let it be. Stay strong.

gypsyheart85 · November 2014

No advice to offer, just wanted to say I am thinking of you and your family. The ladies have posted some wonderful advice here and I really have enjoyed reading all of the posts about the different experiences with DS. Such great wisdom on this thread. Hugs to you mama, as you go through the process of well, processing it all.

awoo22 · November 2014

My thoughts are with you and your family. You will be in my prayers.

CoPilot2012 · November 2014

T&p for you and your family

greks84 · November 2014

One of my students from last year has Down syndrome. She was one of the most delightful children I have ever worked with. She came in early every morning and helped me get my room set up (chairs off tables, re set the date on the board, etc). She touched my heart in a way that I can never truly explain. And I do agree that those with DS can live full and happy lives. Especially if they have a loving family supporting them. Good luck!! You are in my thoughts and prayers.

Aimothy · November 2014

Thinking of you and your family as you process this news, begin to reach out for support and adapt to your new normal.

elee84 · November 2014

I'm a ftm so no experience bringing up a child with DS but I can tell you from working with children wih special needs including hose with DS, they are always without exception in my experience the kindest and sweetest children. Of course there are health implications so you need to be prepared for those; read as much info as you can but if at all possible go to a support group for families living with a child with DS and talk to parents about their experiences. They will give you the most honest and realistic picture of what to expect.

zbornak123 · November 2014

Thinking of you and your family. Take your time processing and gathering info. Try and find some local support. Hugs!

robotgal · November 2014

What tough news. My thoughts are with your family.

I don't mean to give false hope where it's not due, but not knowing your situation, I wanted to point out that the NIPS screening tests are 99% accurate for high risk populations and the accuracies are much lower in typical populations:

Three Years On, What have we Learned about Non-Invasive Prenatal Screening?

That article explains that out of 100,000 30 year old women who are tested, 99.5 will have a true positive result, while 100 will have a false positive result. For this "low-risk" group, receiving a "positive" result actually means you have a 50/50 chance of having a baby with Down Syndrome, which is completely counterintuitive when you read "accuracy >99%" on the marketing materials for these tests.

The only way to know for sure is with a diagnostic test (amnio/CVS). Keeping my fingers crossed for you that you'll receive better news with the amnio.

DivinesMum · November 2014

Your family will require a great deal of time to process and prepare for this challenge, but it will be well worth all of it. Just tons of love, patience, and support of one another is all you will need. Ts& Ps to you and your growing family.

blitzy23 · November 2014

I would take some time to process your news, and then do some research into early intervention services. I'm going to stereotype here, and say that all of the children I have ever worked with or met with DS have been such sweet, hard workers. Sending you strength and delight with your sweetie baby!

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