Content warning: This article discusses suicide.
In June this year, my husband and I had a rational discussion about ending our lives and the lives of our three young children.
Don’t judge me. Don’t assume anything. Let me take you, as best I can, to a very dark place.
Hours earlier, doctors sat us down in a small boardroom at the children’s hospital during what we believed would be a routine visit. A team of doctors — together with a geneticist and psychologist — warned us that our three-year-old son, who had been in and out of hospital since birth with various health complications, likely had a severe genetic metabolic disease which would see him live to a maximum age of 10.
His muscles and bones would slowly waste away. He would stop growing once he’d reached full height (approximately one metre), and would then be wheelchair bound. Our bright boy would gradually fall into the grips of full mental retardation. He would die a very horrible and painful death, most likely due to cervical spine instability and spinal cord compression.
The medical staff asked our permission to conduct genetic testing on our two other children — a five-year-old and a brand new baby. We were told at the time they both had a fifty percent chance of carrying the faulty gene.
In a single moment, we were faced with the possibility that our three beautiful children — who we had fought so hard to make, following years of IVF — were slowly dying. And it was our genes that were killing them. We were responsible.
We battled through two arduous months of genetic testing. The results came back negative for our eldest and our baby. But the testing on our three-year-old was inconclusive and he remains undiagnosed to this day. We are still riding the rare disease roller-coaster, with full genome mapping currently underway. But while we wait for answers, he is receiving treatment and care, and his outlook is promising.