Surgery brings hope for spina bifida babies
A first-time mum backs calls to bring pioneering in-utero spina bifida surgery to New Zealand, reports Nicholas McBride.
The prospect of in utero surgery for spina bifida has come too late for one expectant mother, but she will not love her daughter any less because of the illness.
Aleicia Humphries, of Nelson, is 27 weeks pregnant with her first child – a child who has been diagnosed as having spina bifida.
Her pregnancy puts her narrowly outside the possibility for a groundbreaking new surgery which was performed in Australasia for the first time just a week ago.
On July 23, a team from Mater Mothers’ Hospital in Brisbane, in collaboration with a team from Vanderbilt University Hospital in the USA, performed Australia’s first in-utero spinal surgery on a 24-week-old baby diagnosed with spina bifida. The surgery was led by director of maternal fetal medicine Dr Glenn Gardener.
Gardener said he hoped it could be offered to mothers in New Zealand.
‘‘Ultimately it is our hope that through this partnership, we will be able to provide hope and support for these families in Australia and the Asia Pacific region.’’
That news has been welcomed by mothers in New Zealand.
Humphries was too late in her pregnancy to receive the surgery, but said her daughter would still come into a loving and supportive environment.
‘‘It is not going to change the way we feel about her. If it had been offered here it would have been my first option. I think it is something that should be looked at here.’’
Humphries said surgery would not have made a big difference to her daughter’s ability to walk, but would have helped her move her legs. ‘‘After the initial shock we are excited now. This is going to be our first kid, so this is like our normal,’’ she said.
‘‘It was a shock because I’d taken all the right vitamins and we’d done all the right things.
But at the same time it was not a big deal – she’s coming into an environment that is supportive and loving.’’
Spina Bifida Association of New Zealand executive director Diane Belcher said the defect was diagnosed at 18 to 20 weeks, but surgery had to be done by 26 weeks. If [surgery] had been offered here it would have been my first option. I think it is something that should be looked at here.
Belcher’s seven-year-old son Daniel has spina bifida and uses a wheelchair full time.
Previously, the only option for surgery had been to travel to America. But the cost of US$85,000 (NZ$119,500) and the fact that it was not funded by the Ministry of Health, had been a barrier.
‘‘None of our families could access that (kind of money).’’
.
‘‘I know the reality of raising gorgeous boy with spina bifida.’’
Over the course of their life, she estimated it might cost about $1 million.
"My little boy is worth every cent of that – if that was your child you’d be saying the same thing."
She said the pioneering surgery in Australia now made it a more realistic prospect for Kiwi families.
Ministry of Health child and youth health chief advisor Pat Tuohy said the new procedure’s availability would depend on the demand.
‘‘Spina bifida is a serious congenital disability which has a high cost to our health and disability system,’’ Tuohy said.
The Ministry has money set aside in the High Cost Treatment Pool but would ‘‘not fund experimental procedures’’.
‘‘Only treatments which have a substantial evidence base, and clear evidence of positive medium to long term outcomes are likely to be supported.’’ a