"My child’s journey with congenital heart disease"
Posted by Heart Kid Parent (as ),
My child was diagnosed with a severe heart defect at my 20 week scan. As a sole parent I was scared for my baby and the future. When my child was born last year they was transferred to PMH and operated on within a month to sustain their life.
The surgeon, nursing team and cardiologist were all very professional as you would expect, but what made the experience for me so much better was the community group HeartKids. The wonderful women from HeartKids, supported me and my family with not just emotional support, a lovely lady called Maree, advocated to other services for assistance (including rental assistance), funded my car parking, provided food, and gave me coping and resilience strategy. I was buddied up with a volunteer mentor another HeartKid parent and assisted later by the Hospital Social Worker who I now understand is partly funded by HeartKids.
I thought this was a Government funded program, it was that professional and seamless with the hospital system, but was shocked when my cardiologist told me it was completely non government. This can’t be true surely, so I checked and they raise all the funds in the community.
My feedback is that my journey was and still is dependent on HeartKids staff. Why are they not funded like other medical health charities?