When Molly was diagnosed with Down syndrome, I was confused and didn’t know what that meant for her future. Honestly, I didn’t really know that much about Down syndrome at all. The last eight months, I’ve learned a lot about my daughter and also myself.
So, today I’d like to share some of the things I’ve learned about Down syndrome, in hopes that you will also see that while it may be a scary world, it’s also a hopeful and positive one. Here are some great facts/statistics from the National Down Syndrome Society –
Did you know….?
- Down syndrome is the most common genetic condition. One in every 691 babies is born with Down syndrome. The most common form of Down syndrome is called Trisomy 21 , because it involves an extra copy of the 21st chromosome.
- Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
- Up to 50% of individuals with Down syndrome are born with congenital heart conditions. The majority of heart conditions in children with Down syndrome can now be surgically corrected with resulting long-term health improvements. (Editor note: Molly was in the minority and has no heart conditions.)
- A 35-year-old woman has about a one in 350 chance of conceiving a child with Down syndrome, and this chance increases gradually to one in 100 by age 40. At age 45 the incidence becomes approximately one in 30. (Editor note: I had a one in 850 chance.)
- Individuals with Down syndrome possess varying degrees of intellectual disabilities, from very mild to severe. Most people with Down syndrome have IQs in the mild to moderate range of intellectual disability.
- Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
While I’m no expert on the topic of Down syndrome, I’d love to chat with you if you have questions. What questions do you have? Do you have a personal experience with Down syndrome? Tell me….
Comments
Pam King
So happy Molly is in the minority of heart conditions. She is such a cutie! My family history alone puts me at risk of heart conditions :). I did not know the statistics except that the older a woman was the more at risk to have a down syndrome child. Wow one in 850. You are a fantastic person that has tackled this and Molly will do well in life because of you and Maggie and everybody else involved in her life.
Hugs
Carrie with Children
Thanks Pam! 🙂 Yep one in 850….pretty wild, huh?! I appreciate your nice words!
Amanda Kay
I am getting the chance to read this as I’m snuggling with my 2 year old. He saw your daughters picture and said, “Ah. Look it’s a baby! She’s so cute!” I think so too.
Thank you for sharing this. Before now I knew nothing about Down Syndrome. It was a really good (and easy to understand) article.
Carrie with Children
Thanks Amanda Kay! I think I’m going to make this an ongoing series… maybe it will help spread some more awareness! 🙂 Stay tuned!
A Mommy in the City
Thank you so much for sharing your story and being such an advocate. Molly is lucky to have you as her momma! 🙂
Carrie with Children
Thanks!! 🙂
Cam Brown
When will do you think your adorable little girl will walk and talk? She looks like she so wants to crawl!
Love this Q & A idea!!!
Carrie with Children
Thanks Cam! Right now her physical therapist has us working on sitting up.. she’s *this* close to doing it all by herself. Once we master that, we’ll move on to crawling, but I agree with you..she acts like she’s ready to crawl!
As far as walking and talking…who knows! It’s really an unknown, her pediatrician has said she’s seen some kids walk right on schedule and some kids not walk until they are six years old!
Definitely going to make this a series of post.. perhaps the last Monday of each month?!
Donna
Carrie- I love your spirit! Some of the most loving children and adults I have ever met have coincidentally had Down’s (they are generally so untouched and pure of heart). I’m taking my 17 yo to Athens this summer to work at the Special Olympics. It was a life-changer for me, and I pray it will be for him as well. As you say- they can teach US so much…
Carrie with Children
Oh Donna, that sounds like an amazing trip! Would love for you to share your experience with me after your trip! I hope your son enjoys it!
Donna
YES! With any luck, I’ll be blogging by then. Both of my sons are on the autistic spectrum, so I’ll be telling their story and joys/trials. I can only wish for you that your beauty will have the same tales to tell when she is a teen; the journey is guaranteed to be special.
Nichol
I have a sister who will be 29 this year who has down syndrome. I’ve also been around children and adult all my life from her events(Special Olympics), work, and hobbies. They are the most amazing children and they are full of love. My sister has had heart problems all her life, although has never had to have surgery. She also has seizures and just had another one last night. It’s scary. She was right on track with everything, crawling, walking, although a very picky eater. She has brought me so much love my entire life, and besides my husband and kids, I’m not sure I love anyone more. She is my world, my entire life and it breaks my heart to sit and watch people put her down(trust me they do). My sister works with the Resource Center and has a normal life just like us. Of course she doesn’t drive, but she has a boyfriend, loves to shop, eat out at restaurants, and all that. They are just like you or me, no difference, but so much more special! Maggie will continue to bring you so much love. She is a beautiful baby, you are so very blessed.
Carrie with Children
Nichol – I always appreciate your comments on my posts. It gives me so much hope for my little Molly ….and Maggie too!
Please keep me posted on how your sister is doing. I hope she’s okay after the seizure last night. It sounds like you two have an amazing relationship.
Nichol
I’m sorry sweetie I meant Molly just realized I said the wrong name.
Carrie with Children
Ha! Totally okay… I didn’t even notice it until you mentioned it! 🙂
Kimi
I didn’t realize the life expectancy has increased so much. Thanks for all the great info!
Carrie with Children
Thanks for reading, Kimi! I think I’m going to make this a new series – lots of good info to share!
Melissa
Thanks so much for this Carrie, I love all the information that you share.
Molly and Maggie are so lucky to have such an awesome Mom!
I just know that Molly is going to have such a long, love filled life!
LeeAnn
Great post! I love how you share so much information. You are certainly bringing awareness to Down’s. Molly sure is lucky to have you as her mom!
Kristina
Great information! Thank you so much for sharing, your daughter is adorable 🙂 I’m a new follower from the blog hop! I can’t wait to read more of your posts.
~Kristina
http://www.cobbled-stone.blogspot.com
Judy
My big brother is autistic, and because of his disability I had many opportunities to get to know kids with Downs Syndrome. My senior year in high school, the prom king had Downs and it was one of the most amazing experiences! God must have trusted you incredibly to have sent such a precious little girl to you.
Carrie with Children
That is a great story, Judy! Thanks for sharing and your nice words about our little Molly!
Tracy Roberts
Carrie,
Love this blog! It’s always so great to hear from other moms who have been blessed to raise a child with DS.
My son will be six next month and he is the light of my life. We didn’t know until he was born that he had an extra 21st chromosome. I love the way you describe embracing your Plan B. Letting go of the dreams and expectations I had for my unborm child was the hardest part of learning his diagnosis. Luckily, I devoured all the books and other parent’s advice I could find and learned that all I had to do was dream a new dream–one that was realistic and joyful for my son.
All parents think their child is the best, but I know I am truly blessed by my son. He is the sweetest, most affectionate and happiest child I have ever met. He wakes up happy, laughs all day and loves unconditionally. My Plan B dream comes true everyday because my wish for him is to be happy and enjoy his life. His attitude keeps me grounded and he has become my greatest teacher.
If I may, I also wanted to take a moment to remind your readers that our children are children first; they just happen to have special needs. Please remember to use “person first” language when talking about someone with a disability or special health care needs. It’s a small thing that everyone can do to promote awareness and acceptance.
Grateful for a moment to reflect . . .
Tracy
Carrie with Children
Hi Tracy – Thanks so much for your nice words about my site! I love how you mentioned that your plan B involved dreaming a new dream for your son – one that was realistic and joyful! So awesome! 🙂
“Person first” language is so very important to those of touched with special needs. Sometimes the little things make all the difference!
I appreciate you taking the time to share with me. I hope you’ll keep following along!
Tamara
I had no clue that up until recently that people with Down Syndrome had such a short life span. It’s amazing what strides have been taken medically to help increase their life span. Amen! 🙂
Thanks for sharing, Carrie!
Carrie with Children
Thank you so much for reading, Tamara! It really is amazing the vast improvement in life span over the last few years!
DeJaa
Hello! I just wanted to say that your daughter is beautiful! My son, Luka, has downs. He is this little amazing bundle of joy! He is only 3 months old. Unfortunately he has a heart condition and will be getting surgery when he is 6 months old. He also has some hearing loss. Its hard for my husband and myself because our other 2 kids don’t really understand and think Luka messed up everything because we have to do so much with him. I believe every family that is blessed with a child with downs has to be an extraordinary one!