Families of prem babies feel 'let down'

After struggling for years, the parents of two prematurely born disabled children say they feel let down by the health system.

The Lewis and Ross families say it was never explained to them that "no effort would be spared" to keep their babies alive when they were born at National Women's Hospital.

Nor were they fully informed of the potential health problems their babies could face - both school-age children suffer from cerebral palsy and a range of other health issues and learning difficulties.

"We have reached the point where we just cannot go on any more," said Franky and Tony Lewis and Leesa and Lance Ross in an email.

"We are physically, mentally, emotionally and financially drained."

They believe parents should have the right to decide whether their baby is kept alive and say "scientists need to stop playing God" with other peoples' lives. Scientists had created a "new type of very high-need disabilities", but those needs are not acknowledged. The families say they face a constant battle with authorities to get the help their children need.

"We do not want to give up on our children," said the two couples, who live north of Auckland. But they worried that if funding continued to be "rationed", they would have to put their children "in the hands of some institution".

Health officials and doctors sympathise with the families' situation and say possible outcomes are discussed with the parents of premature children.

But it is difficult to predict long-term outcomes reliably with newborns.

When Keegan Lewis was born in April 1996 at 26 weeks, he weighed 792g and was not breathing. He was resuscitated more than once and later diagnosed with cerebral palsy and epilepsy.

Holly Ross was born in June 1997 at 27 weeks, weighing 910g. A scan weeks after her birth revealed she had a brain injury. She suffered feeding and respiratory problems and was also diagnosed with cerebral palsy. Keegan's school funding had been cut back as had holiday funding for both children. The families also understood the home support services they received would be seriously "downgraded".

They want their home and school support services maintained, with the possibility of more hours when needed.

"We love our children dearly and would like to give them the best life possible. We would also like that other parents in our situation are made aware of their choices and have the right to make an informed decision whether to have their child resuscitated at birth or not."

Dr Carl Kuschel, clinical director of newborn services at National Women's at Auckland City Hospital, said it was rare for doctors and parents to be at odds over treatment.

"We are in a caring profession. We don't want to produce survivors at all costs."

Dr Kuschel did not know the details of the individual cases but said possible outcomes for premature babies were discussed with parents.

Dr Kuschel said it was a "difficult balance" but doctors were "extremely reluctant" to provide care to 23-week-old infants as the survival and long-term outcomes were much worse. After 24 weeks, their chances improved.

"At 26 weeks we feel the outcomes are in the baby's favour so much it would be very difficult for us not to provide care unless there were really extenuating circumstances."

Ministry of Health child and youth health chief adviser Dr Pat Tuohy said parents needed to be given as much information as possible but often were not in a position where they could take it all in. Emotion and hope for the future often played a big part in any decision they made.

Dr Tuohy acknowledged many families were struggling to look after children with special needs and said it was difficult to provide all needed services.

Support such as disability allowances were available but he urged any family unhappy with the help they received to contact their district health board or the Health and Disability Commissioner.

Tiny Survivors

* About 75 per cent of 26-week-old and 80 per cent of 27-week-old babies survive.

* 20 to 25 per cent born under 30 weeks suffer a disability such as cerebral palsy, hearing impairment or severe development delays.