One of out every 100 babies is born with some form of a heart defect, making it the most common birth defect. Most of us go through life mostly unaware of that fact. Until it is your child…
For us, it happened when Joshua was 4 months old. I took him to the doctor because he had a bad cold and conjunctivitis. Next thing I knew, an echocardiogram was being done and I was told my baby had practically half a heart with no visible connection to his lungs. We were thrust into a whole new world where we were powerless to help our child and totally reliant on the doctors and the medical world.
At the time, Port Elizabeth had a world-class paediatric cardiology unit. I was petrified that my baby would die, but found comfort in the fact that help was available. He had cardiac catheterisation done and emergency open-heart surgery the next day. I became part of a world where moms hand their babies over to doctors, knowing their chests are going to be pulled open and their hearts stopped for hours. We somehow survive this without falling apart.
We rely on the doctors to do the best they can and pray for a good outcome. For many of us, this happens more than once. For the babies with complex, critical congenital heart disease (CHD), it becomes a shadow hovering over their whole lives. You go through the trauma again and again and it changes you forever. It changes how you parent, as you just don't know what may be around the next corner.
We take pride in our babies – they are so much stronger than we are. We also know that they trust us completely to navigate this harsh reality, and all of us wish that we could rather have these procedures done to ourselves. That we don't have to see our children go through it. That we could take their place on that hospital bed.
For us here in the Eastern Cape, the trauma was compounded when our only cath lab broke beyond repair two years ago. Suddenly, our children were denied these life-saving procedures. We go for check-ups to hear that intervention is needed, but the equipment is not available and to come back in a few months. Again and again, you are sent home with a child that you know is getting weaker and there is nothing you can do. You get angry at those in power who play games with your child's life.
For some of us, the fear and anxiety has developed into permanent mental illness. We live with these monsters inside us while trying to stay strong for our children. We watch our babies for signs of distress. We wake at night to check breathing and just feel their little heart still beating. You carry on with life because you have no choice. But this shadow is now a menacing monster - always there threatening to take your child.
We cry. A lot. We vent where we can. But most people don't understand, so we feel isolated in our fear and grief.
I have tried my utmost to bring about change for my child and those moms that queue at the clinic with me and sit in the hospital wards with me. This fight has been going on for two years. I don't know how many babies have died when they shouldn't have.
Right now, my Josh is getting weaker. We are still being made promises, but we don't believe anymore. We are disillusioned, heartbroken, scared and angry. And feel powerless. Because no one is taking responsibility. We don't have a place for our anger to go.
Right now, I am trying to raise funds for Joshua to have his catheterisations done privately. I cannot watch him fade and do nothing. He is going about the business of growing and learning and being excited about his birthday, while I smile and try to be cheerful while constantly feeling like falling apart.
There are other moms going through this, too. The waiting list is getting longer. We are losing key medical personnel. Our tears, fear and anger cannot change this. We need the Department of Health to step up.
Our children are slipping away as we wait. The compounded grief cannot be put into words. We can only do what moms with terminally ill children do - love them, embrace every moment, make their lives as happy and comfortable as possible and shed our tears alone.
Written by: Elmarie van der Merwe