Opinion: Let me tell you a story: one of fear, anguish, and medical miracles, followed by a sequel of fear, anguish and medical heartlessness. It is a story about a Wellington boy who was 16 when he got leukaemia 10 years ago.
Three courses of chemotherapy failed to arrest the disease. He went through 10 months of pain, fear and feeling the sickness of the illness and the drugs.
His consultant told him, “You may die.” And there were many times during those 10 months that this boy felt like death, and close to it.
His consultant also told him that if he didn’t die, he’d almost certainly be infertile. So, just three days after being given his horrifying diagnosis, he stored some straws of semen in a Kiwi fertility clinic, preparing for a day when he might want to start a family.
Plan A was chemotherapy: a total failure. So, we embarked on Plan B, a bone marrow transplant. Finding a match was complicated because of his blend of NZ European and South American genetic heritage. Plan B was also a failure when a search for compatible bone marrow in the international donor bank was also unsuccessful.
Plan C, the last available option, was to search the stem cell donor banks. A donor was found. Not a full match, but enough of a percentage to make it viable. Donated umbilical cord blood from a baby in New York was couriered to Auckland to be dripped into his system.
But leukaemia cells are tricky. They lurk and hide in the testicles and the brain stem. So before the transfusion, more courses of radiotherapy and chemotherapy effectively killed almost everything in him.
Over the next few days and weeks following an infusion, his blood counts slowly rose until finally he was allowed home. Thanks to the kindness and forethought of strangers in New York, this boy’s life was saved. That this family would think to lodge a sample of their umbilical cord blood in an international blood bank for the use of others is a remarkable act of kindness.
He weakly shouted, “freedom”, as he left Starship Children’s Hospital after three months inside one room. The stem cell transplant had taken, and this young man got on with his life. He finished school. He went to university. He partied. He made up for lost time and he grew into a considerate and cheerful young man.
That was the miracle: of medicine and care. A miracle that he went through it all, uncomplaining and accepting.
Teenage years passed, and into his 20s he began a relationship. The relationship was very young when the miracle soured.
A letter from the fertility clinic arrived to say his semen was about to be destroyed, as his 10 years of storage under section 10 of the Hart (Human Assisted Reproductive Technology) Act, were up.
It’s an ironic acronym, because the treatment of a young man about to abruptly lose his only chance to be a father was heartless.
It was stressful and distressing. It took a specialist lawyer, urgent, late-night appeals for compassion, hundreds of pages of evidence, and tens of thousands of dollars. And in the end, a lifeline from an Australian storage facility to preserve his right to choose.
Our family were fortunate: we had the resources to act. But not all families are so lucky. This is a call to arms for those families.
A survivor of childhood cancer shouldn’t have such a deadline to have a child himself. Let’s get the Hart Act amended. It’s about human rights and natural justice.
Ann Chapman is a writer, former district councillor and district health board member and a retired JP.
