Dear Henry

Australia's biggest-selling daily newspaper

Designer Baby to Cure Brother
Zoe Taylor
08mar04

AUSTRALIA'S first "designer" baby, a boy, will be born in August.
How it works

Doctors have used a controversial IVF technique pioneered by Monash IVF scientists to ensure he will be healthy and a tissue match for brother BJ, 4, who has an incurable genetic disease.
Like Victorian toddler Christina Curkowskyj, BJ needs a bone marrow transplant to live.

His brother will provide bone marrow in stem cells collected from his umbilical cord at birth.

Christina's family fought for the right to get access to the same IVF technique, pre-implantation genetic diagnosis, in 2000.

It is already widely used in Victoria to test for life-threatening genetic disorders.

But it is illegal in this state to use it for tissue-matching to guarantee a baby can provide a sick sibling with lifesaving stem cells.

Christina's parents conceived naturally and the healthy baby was a perfect tissue match.

IVF laws are different in NSW, and Sydney doctors used the sophisticated IVF technique to create Australian medical history.

A delighted Leanne, 34, of Tasmania, is now 14 weeks pregnant with the boy who can offer BJ the gift of life.

"This was our ultimate aim, but we thought it was a bit pie in the sky stuff to begin with," she said.

"We were going to have another child anyway. We would have gone naturally and taken the risk if this had not worked."

Had Leanne and her partner, Stephen, conceived naturally, the baby could have carried or developed the rare incurable immune deficiency, hyper IgM syndrome.

The syndrome, reported in about only 30 children in Australia, leaves BJ prone to infections. He relies on weekly hospital visits for antibiotics and blood transfusions to boost his immunity.

He is responding well, so doctors are not planning to carry out a bone marrow transplant as soon as his brother is born.

"It's an insurance," Leanne said. "We are hoping that it might never need to be used, if a cure is found in time."

If BJ is still doing well in August, the baby's umbilical cord blood will be stored.

Embryos were created at Sydney IVF by fertilising Leanne's eggs with Stephen's sperm.

When they were five to six days old, cells were removed and their DNA tested. It took three cycles of IVF to create a viable embryo that was neither affected by the condition or a carrier of it – and which was a tissue match for BJ.

Stephen and Leanne, who are withholding their surname to protect their son, went to Sydney just before Christmas to have the embryo implanted.

Stephen, 35, said: "I couldn't care less what anybody thinks.

"It's not like we are having the baby just for BJ."

"I fully recognise that there will be people that don't agree with it," Leanne said.

"But we want people to know that it can be done here, and you don't have to go overseas."

Stephen said: "There was a family from Melbourne going to America for the same treatment, while we were going to Sydney."

Sydney IVF started offering PGD to find a tissue match for an existing sibling two years ago.

About seven couples have been through the program, though the child of the first family died before the mother became pregnant.

There has been only one other known case, in America, of a child being born to save another.

Adam Nash was conceived in America in 2000 to save his sister, Molly, who had a blood disorder.