A Different Kind Of Heart Day

So today was Valentine's Day, but it was also Congenital Heart Defect Awareness Day. I bet you didnt know that? Congenital Heart Defect awareness is as important to me as Down Syndrome Awareness because the two of them go hand in hand. Fifty percent of children with Down Syndrome have a Congenital Heart Defect, and Paige is one of the 50% of children affected.

Paige was diagnosed with a Ventricular Septal Defect (a hole in the heart) in utero as most of you know. We are very lucky that she hasnt had any problems with this and its slowly closing. I was so very worried that she may have had to undergo open heart surgery to correct this but luckily, her Cardiologist says its not needed. The only surgery she ever had was coil insertion to correct her Patent Ductus Arteriosis (persistent arterial duct) that remained open after birth, causing her to have increased heart/lung pressure. This was done by catheter inserted into the groin.

For many other children with CHD's they're not so lucky, having to undergo operation after operation. One of the ladies who works at the gym has a niece who has a CHD and has had so many operations in her short life. I cant begin to tell you how many operations she had in her first year. Paige is one of the lucky kids. We are very fortunate that we dont have to go thru any of what other children with CHD's have to go thru.

Did you know?

*Heart defects are present in 1 in 100 babies

*Heart defects are the most common birth abnormality

*Heart disease in children is the leading cause of young children death in Australia, accounting for more than 30% of all childhood deaths.

*Childhood Heart Disease takes more lives than all other childhood diseases combined

*Nearly twice as many children die each year from congenital heart disease compared with all childhood cancers

*More than 2015 babies are born in Australia each year with a heart defect

*Childhood heart disease is no fault of the parents or the child. It is simply a result of the cruel hand of fate

*The severity of defects in heart children can range from a hole in the heart, to a highly complex combination of conditions

*Up to 20% of heart defects are gene-linked abnormalities, but for the remaining 80% the cause is largely unknown

*More than half of these conditions are serious enough to require treatment through medication or surgery – sadly some cannot be repaired

*Cures of these heart conditions remains unidentified, therefore there is an immense need to develop early intervention strategies to identify and prevent heart disease in children

*Heart disease is the most common reason for admission of Australian children to intensive care units with more than 1300 being admitted each year

*The term ‘congenital heart defect’ refers to an abnormality of the heart, which is present at birth. It has nothing to do with diet or obesity

*Heart valve replacements come in 3 forms: homographs (valves from humans) tissue valves (from cows or pigs) and mechanical man-made valves

*Some children acquire heart conditions during childhood, eg cardiomyopathy, Kawasaki disease or as a result of rheumatic fever

*A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is rampant in many communities

*Heart Transplants are much more challenging for children as their immune systems are not fully developed

*The only Paediatric transplant unit in Australia is at the Royal Children’s Hospital, Melbourne

(taken from the HeartKids Victoria website)