Money My Life with Half a Heart…Only Half Understood

If you have a diagnosis of diabetes, epilepsy or asthma schools, health care teams and benefit services understand your needs because they have been recognised for generations.

Sadly children with complex congenital heart disease, half a working heart, have been left behind.

25 years ago the vast majority of children born with half a functioning heart would not have survived.  The risks of the experimental surgery needed to give a newborn baby any chance of life were incredibly high with many parents being quoted as much as an 80% risk of losing their child. 

Today, thanks to surgical developments, survival rates from the first stages of surgery have almost turned on their head with more than 70% surviving their operations and more than 60% surviving the first five years of their life.  Currently there are over 3300 children and adults living with a single ventricle heart.

However these young people have not been cured.  Their surgery is palliative; it just bypasses the parts of the heart that have not developed. They still only have half a working heart. It does not take a genius to understand that they will never have the same energy levels of their peers or achieve the same independence in teenage or adulthood as they would like.

The 2019 Little Hearts Matter Awareness week aims to raise a greater awareness of the needs of children, teenagers and adults living with single pump heart.