Heart conditions in children with Down's syndrome

I’ve joined a group of mums to answer a Monday question.

As this month is #downsyndromeawarenessmonth each Monday each of us will either write a fact or a myth about Down’s syndrome.

I’ll say what the fact is. I’ll also write what quality the fact brings out in us all.

Fact about Down’s syndrome

About 50% of babies with Down’s syndrome are born with a heart condition.

At birth we learned Coraline had a heart condition called Atrioventricular septal defect (AVSD). She had two holes between the chambers of the right and left sides of the heart (one across the right and left atrium at the top of the heart and one across the right and left ventricles at the bottom of the heart) and a leaking valve.

Due to the fact that babies with Down’s Syndrome can have a congenital heart condition, they checked for it when she was born.

Coraline had open heart surgery on 2 November 2018 at 15 months old. The surgeon repaired a leak in her left atrioventricular valve and closed two holes in her heart.

What did this bring out in us?

Vigilance, as we had to keep her well a lot in the run up to her operation (as her heart would have been less able to handle illness).

Acceptance that we couldn’t go to regular toddler groups during long periods of months when her Cardiologist asked us to keep her well before her operation. A

Awareness of our surroundings each time we took her out, to ensure she stayed healthy.

For me the biggest thing was about our thoughts at the time of her operation. We realised the best path for us was not to speak to anyone else who’d been through it with their child. We focused our minds on belief and trust in the doctors and on knowing our experience would be uniquely ours. We had the power to choose our perception and our attitude towards it, creating our experience.

Coraline was home in less than a week after her operation. We were amazed and impressed by the medical team and her care. In fact she is due for her annual check-up soon.

Pic of Coraline this morning.

To see what others have answered see #ourEXTRAordinarylife
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