Parents of children with heart defects: ‘We fight until they help our child’

The three-year-old girl was born with a heart defect. But due to stricter European rules, manufacturers of stents and prostheses are moving away from Europe. Charlene Fagneray, mother of Daisy: “It’s a pitch black cloud. You end up in hell, you go through it again, and again, and again. You hope it will stop, and after 2 years and 9 For months you hope it will stop and then you get this on top of it. It just doesn’t stop.”

More operations will follow. But: there is a threat of a shortage of medical equipment, such as stents and prostheses. “We can really rub our hands that we still have our daughter. And we find it very distressing that we have to hear that news, that the materials they need to operate on her and many other children are no longer available. going to be.”

Less safe

Because the European rules are strict and producers are therefore leaving. Marc Gewillig, pediatric cardiologist at UZ Leuven: “If you have prostheses with small numbers or small sales figures, the cost per prosthesis has become so high that it is no longer feasible to have and keep them on the market. The end result is that a a significant number of prosthetics will disappear from the market, so that it will ultimately become less safe.”

Purchasing that material outside Europe and bringing it here may be an option, but that would cost a fortune. Charlene Fagneray, Daisy’s mother: “For us personally, I think that is around 600-700,000 euros. Fortunately, we did not have to pay much ourselves. But there will come a time when that may be passed on to us. And who can afford that? Nobody.”

So the parents let out a cry for help. And they are not alone: ​​up to 500 children in our country are at risk of being victims. “I want them to get the materials they ask for, I’m not going to stop fighting until they get it. Until they can help my child, our child. Until they can help other children, until they can help every child.”