Concerned parents of children suffering from congenital heart disease (CHD) across the Cape Flats claim that not much is being done to raise awareness around this serious disease.
The group voiced their concern to People’s Post last week with the hopes of raising awareness. They say the cost of saving the lives of their loved ones is ridiculous and underfunded by the government.
“CHD is not given the same attention as diseases like HIV/Aids, cancer and TB. This is a serious disease and many children have lost their lives because of it. Families don’t have the funding for operations which could cost up to R600 000 for a child to undergo heart surgery,” explains Fareed Matthews, a father from Silvertown.
“It is majorly underresourced, underfunded and not considered to be a chronic illness, despite the fact that 60% more children die of CHD than all childhood cancers combined. It is now time to stand together to campaign against the seriousness of CHD and the need for much-needed services and lower surgery costs.”
Matthews, the founder of Brave Little Hearts SA (BLHSA), established an advocacy and family support centre in 2014 to assist affected families.
The organisation was also opened in honour of his daughter Thaakirah Matthews who was born with CHD in 2009, which caused multiple complications. She managed to triumph over two heart and two brain operations during the first four years of her life.
“Up until now CHD awareness campaigns have only been done online and in a few media papers. This is not enough to give a strong message across. CHD awareness should be taken to the streets to provide the public with roadshows, clinic healthcare providers, training campaigns and so forth.”
He says this phase will require funding and partners to spearhead this awareness and activism. “The goal is to bring the message of CHD to the fore as was done with HIV, cancer and TB campaigns, which today have government-sponsored campaigns and private sectors. It is time that these sectors get involved and create infrastructure and funding for CHD families and patients.”
Apart from the support for families, Matthews says more surgery time, bed space and staff training, among other things, are also needed.
“Our children are dying because we don’t have proper services, equipment, trained staff and something as simple as enough beds in ICU and cardiac wards. They are dying because local GPs and gynaecologists are misdiagnosing them, and their heart defect is not picked up by maternity clinics at regular scans.
“Children are also misdiagnosed as having asthma, pneumonia and other illnesses that are the direct side effects of a child with heart disease. They are constantly treated for the side effects, but not the heart defect, because of untrained doctors and nurses.”
He says there is a long list of serious issues that need to be addressed and this will now have to be brought to the masses for them to realise families are losing the battle with CHD.
“At some point the authorities are going to have to listen to us. Like cancer, TB and all those other diseases are known by all, so will CHD be known and supported by the masses, one day soon.”
Matthews has called on other CHD campaigns to take the matter to parliament.
Read our next edition for the Department of Health’s response, and for more insight into the seriousness of CHD.