a risk for life

There is a tragic story in the news today. A story that makes you wonder how often tragedy and grief can stalk one woman.

According to the Herald Sun Julie Cini gave birth to a baby girl last month. Which should have been a time for rejoicing for Julie and her partner and family. But the joy was mixed with grief and fears.

Julie’s first daughter Montanna was only ten months old when she died from SMA – spinal muscular atrophy. An incurable condition that causes the relentless degeneration of motor neurones in the spinal cord.

Then Julie got pregnant again to her partner Ross Brownlaw. They were thrilled. The happiness was short-lived. Ross, aged 39, was killed in a car accident just metres from their home in May.

Throughout her pregnancy Julie prayed and hoped that her unborn baby would be spared the genetic disease. She was not. Zarlee has been diagnosed with SMA – the same degenerative disease that killed her sister.

Understandably, Julie is devastated and admits she could be going down the same fatal track that took her other daughter.

It is a tragic story. But it does raise some moral and ethical questions. SMA is inherited. I’ll try to be delicate here but is it right to bring another baby into the world when a genetic disease has already killed her sister. Is it worth the chance that she will be missed. She’ll be spared. It applies to many inherited conditions.

Take breast cancer. I know of a case where a young woman has refused to have children because her mother died from breast cancer and her mother’s sister died from breast cancer. Other women have, what they call, ‘insurance mastectomies’ to try to break the cycle.

Faced with such a dilemma what would you do. Risk having another baby. Or concede the risk is too great and the projected heartache to much to handle.

Julie Cini’s comment: ‘Zarlee has the right to live and if she has type one and she passes away we’ve got to learn to live and love her’.

Tuesday, January 9, 2007

©Copyright Derryn Hinch 2007