Did you know that 50% of babies born with Down Syndrome are also born with a congenital heart defect?
Olivia-Grace had her first open heart surgery in 2021 aged six months old. Her mum Sharon told us all about the medical journey of heart hero daughter in this special blog for World Down Syndrome Day.
Read on to find out how you helped make her “the happy 2-and-half year old she is today” through your donations…
Mum, Sharon, told us:
“We found out that Olivia-Grace had a Complete Atrioventricular Septal Defect (AVSD) when she was two weeks old. She was started on diuretic medicine and high calorie milk to help her gain weight for her open heart surgery.
“Olivia-Grace was due to have her surgery in October 2021, at 4 months old, but when we arrived at Leeds, Olivia-Grace’s lung had collapsed in the car park. She had two viruses and she ended up on vapotherm oxygen and antibiotics on the High Dependency Unit (HDU).
“It took her until early December to recover from the viruses and she had her surgery on the 29th December 2021.
“After 8 and a half hours in surgery we went to see her in PICU where her surgeon explained all had gone well but she’d suffered a complete heart block during surgery. This meant she would need a pacemaker fitting.
“Unfortunately, Olivia-Grace became very poorly as both her lungs had collapsed. She had a lot of fluid in them and had come down with two more viruses.
“After three weeks in PICU and another surgery to fit her pacemaker, Olivia-Grace moved to HDU and then onto the heart ward.
“Due to her infections, Olivia-Grace was needing oxygen, so we spent the rest of our stay in hospital on the respiratory ward.
“After five months, Olivia-Grace was discharged from hospital on oxygen. She’s now a happy 2-and-half-year old!
“During our journey, CHSF helped us massively by giving us accommodation so we could be with our little girl throughout her stay.
“Sarah in the Family Support team came around to see us on the ward, chatted to us and gave us a voucher towards our food in the local Tesco.
“She also sorted some money towards train expenses so that our other children and my husband could come and visit more.
“This was all was a massive support and help during our journey.”
The Creed of Babies with Down Syndrome
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I am no different
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It comes from the heart
We all have the same purpose
Though not from the start
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace
– Author Unknown
It’s only with your support that we can keep being their for the thousands of babies, children and adults like Olivia-Grace living with a heart defect in our region. We’re there for their families too!
Could you make a donation towards our life-saving work?
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