For a few short weeks, Naomi and Scott Baines held a new life in their arms and were parents. They brushed their baby girl's hair, bathed her and considered themselves blessed for it. They watched her sleep and tried not to see the tangle of tubes that were doing for the little body what it would never do unaided - breathe, swallow, live.
Abby Baines died in her parents' arms before she was five weeks old, victim to the uncommon genetic condition myotonic muscular dystrophy, which had gone undiagnosed in her mother for 28 years.
Almost three years since the tragedy, only a costly and complex IVF genetic screening procedure is keeping the Baines' dream of parenthood alive.
The procedure, preimplantation genetic diagnosis, involves testing for genetic conditions in the embryo before it is transferred to the uterus.
The Baines have already sold one of their cars and moved from a house to a flat in Thirroul to pay for two unsuccessful cycles of the procedure.
Now another hurdle looms.
The procedure may soon be priced out of the reach of the couple if proposed changes to the Medicare safety net occur.
Assisted reproductive technology - including IVF - is to have a new benefit cap imposed from January 1, 2010.
The Government says the cap will leave families with a genetic complication no worse off because the genetic screening component is separate to IVF and has never been included on the schedule of benefits.
However, specialists opposing the cap claim it will cause the out-of-pocket cost for genetic testing and IVF to blow out from $4000 to $9000 per cycle.
The Baines are unsure how long they will be able to continue trying for a child if the reforms occur and want the Government to assign a separate benefit number to the genetic testing component of the procedure.
"We've done everything we can to minimise our costs so we can put all our money towards IVF," Mr Baines said. "But we can't save that kind of money in a year - it's ridiculous."
Yesterday a spokesman for Federal Health Minister Nicola Roxon said the independent Medicare Services Advisory Committee would advise the Government on listing the genetic testing as a new Medicare item.
"The Government understands the needs of families who utilise (genetic testing) in order to avoid significant genetic illnesses," the spokesman said.
"For the IVF - these families will be no worse off than any other family using IVF. For the actual genetic testing - there has never been a (Medicare) item number to cover this test, and if IVF specialists have been adding it to the total fees charged to the Medicare Benefit Schedule they have been acting inappropriately."
Member for Cunningham Sharon Bird has made representations to the minister on the Baines' behalf.
The couple is hoping to complete one more cycle before year's end.
"We have so much love to give and our hearts ache with the hope of one day being parents of a healthy child," Mr Baines said.
The process
Preimplantation genetic diagnosis involves screening an embryo for certain conditions to ensure a couple with a history of a genetic condition have a healthy baby.
The embryo is created using IVF.
Eggs are removed from a woman's ovaries then fertilised with sperm in a laboratory.
Only embryos that do not have the condition being screened are transplanted into the woman's uterus to develop normally.
There were 31,000 IVF cycles in Australia in 2008 and 1000 involved genetic testing.
In Australia the testing is only offered in private clinics.
Discuss this topic in the Assisted Conception forum.
