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Life with a baby who has half a heart and Down syndrome
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- čas přidán 15. 08. 2024
- They told me that half of her heart did not fully develop (HRHS), and that she had a life-threatening severe coarctation of the aorta as well as Down syndrome. They could not tell me what her outcome would be. This news initially robbed the joy from my pregnancy until I made the decision to celebrate every second with her while pregnant in hopes my positive energy could change her outcome. She came out stronger and bigger than anyone expected. She had no complications with her 2 open heart surgeries that she had at 11 days old and at 4 months old.. The hardest part of her surgeries was dealing with the NG feeding tube that they placed after the first one. She wound up having it for 15 months and we had little support or guidance on how to wean her. She still needs a third surgery and there’s always a chance a heart transplant might be needed. While we wait, we want to raise awareness for congenital heart disease and Down syndrome. The silver lining in everything we have gone through has actually been the Down syndrome aspect. Most people don’t realize what Down syndrome is like until they become a family member or friend of a person with Down syndrome. This video will give others a glimpse of this silver lining.
If you would like to be a part of this journey and help raise awareness you can follow me on instagram at- graces_joyous_heart_journey or on my Facebook page: Marjorie Jean and Amazing _Grace_joyous _heart.
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#gracejoy #halfaheart #cutebabygirl #cutebaby #downsyndromelove #dslove #DSawareness #NIPT #chdawareness
#downsyndromebeauty #changetheworld
#happinessisdownsyndrom #artistmarjoriejean
I live in a Nursing Home with 31 friends. I asked our great Caregivers if we could have this for our Room Screen wake up call at 7:30! A Carer arrived with a wheelchair I don’t normally use. I was taken to the Unit where our special friends battling Alzheimer’s and Dementia a very sad illness!
Their doors were open some in their chairs some still in bed. All looking at their room screens watching this Beautiful Mum and her Little Angel. All were sitting in their room’s in silence with big smiles on their faces!
Thank you!!!❤
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what a sweetheart baby girl!!!!!! I do know what it's like to have Down Syndrome because I have Down Syndrome too Marjorie it will be ok, Just enjoy cuddling your little Bundle of pure Joy!!!🥰🥰😃😃😍😍😍💖💖💖💖💖💖💖💖💜💜💜💜
My sister is turning 53 this month. She has Down’s syndrome. She did go to a special school where she was very popular. She was a prom queen, cheerleader, ballerina, gymnastics and valedictorian. She has slowed down but who hasnt
She is simply so cute and lovable!!❤❤❤❤❤God bless her!!!!
She is so so so beautiful and precious ❤ my heart explodes looking at that sweet little face 🥹
She is the most beautiful girl I have ever seen ❤
Absolutely precious child. God love her and your family. She is perfect ❤❤❤❤❤
Our 18 year old son has Down Syndrome and Autism. He makes our hearts sing and I cannot imagine my life without him! ❤️🥰
One of my cousins,was just like this lovely Little girl,and I loved Her, so much...
Simply Beautiful ❤!
Both your children are precious. ❤️
My daughter is 14 with HLHS, she has had 4 open heart surgery and 8 cardiac catheters ❤
Beautiful.❤❤❤
❤❤❤ well said. She's beautiful. 😇
Cher madame que DIEU tout puissant protège votre enfant de tout mal et je vous souhaite plein de bonheur 🤲
Wowo beautiful baby.. love her already...she is an angel.. it brings tears to my eyes ..she is very playful and a real diamond...may God bless her and protects her always.. ❤❤ and that she has a long life with her beautiful mom... strongly feel this beautiful baby in my heart ❤
WHAT A LITTLE SWEETHEART.
Marjorie Jean, she’s so sweet and cute.
Aww, she is so perfect and such a great gift from God.💗
What wonderful sentiment & a beautiful baby
Sweet baby❤❤❤❤❤
You are blessed with a beautiful and precious jewel from God's treasure trove.
No one. Would ever want a child with Downs Syndrome or any other birth defect over having a healthy child. I think you are being delusional when you say that. I grew up in a family with a CP child. All my aunt worried about was what would happen to her if my aunt died first. She never had more children for fear of another disabled child. At that time, there was no help or resources. Thank God my aunt had means and didn’t need public assistance. She also raised me when my mom died. There is a special place in heaven for her. I wish you well and hope Eve has a good life.
Your baby is so cute sweet and beautiful
🥰🥰🥰
❤❤❤❤❤❤❤❤❤❤❤❤
Yes❤❤❤❤❤❤❤❤
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