"My child’s journey with congenital heart disease"

About: HeartKids Princess Margaret Hospital for Children

(as the patient),

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?

Responses

Response from Victor Cheng, Executive Director, Health Service Managament

picture of Victor Cheng

Dear Heart Kid Parent

Thank you for sharing your experience with us and for providing such positive feedback regarding the care and treatment of your child at Princess Margaret Hospital (PMH).

I can assure you that staff from your children’s treating team and HeartKids will be thrilled to hear such positive feedback.

I’m not really able to comment about the funding of HeartKids because it is an organisation separate to Perth Children's Hospital, but we do try to work closely with our partners to ensure that all our kids get a seamless service. I’m glad that this has been the case for you.

I really appreciate you taking the time to write to us and wish your child all the very best for the future.

Warm regards

Dr Victor Cheng
Executive Director
Perth Children's Hospital

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
;