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Auckland mum pioneers pathway to access in-utero surgery in Australia

Photo: Auckland mum pioneers pathway to access in-utero surgery in Australia
An Auckland mum has safely returned home from Australia after becoming the first New Zealand woman to undergo in-utero spinal surgery for her unborn baby diagnosed with spina bifida.

A team from Mater Mothers’ Hospital in Brisbane, led by Director of Maternal Fetal Medicine Dr Glenn Gardener, performed in-utero spinal surgery on Catherine Harper and her 24 week-old in-utero baby on 29 December 2016.

Spina bifida is a condition where the lower part of a baby’s spine is open and it affects 1 in every 1000 pregnancies in New Zealand. The effects of spina bifida on a child are significant and can include inability to walk and the need to drain fluid from the brain. Families often discover the diagnosis of spina bifida at their 18-20 week pregnancy ultrasound scan and repairing the spinal defect is usually undertaken after the baby is born.
Catherine and Paul received their baby’s diagnosis of spina bifida at the 19 week scan and have been on a whirlwind journey since, with a small window of opportunity for in-utero surgery between 23 and 25 weeks gestation.

“The scan was going really well but just at the end the sonographer said she wasn’t happy with baby’s brain and skull. Our baby was diagnosed with spina bifida and we were told the worst case scenario… but every case is different,” said Catherine.

The expectant mother started researching and found the MOMS study, a seven year trial in the US which demonstrated benefits for babies who undergo prenatal in-utero surgery to treat spina bifida in comparison to surgery after the baby is born.

“Long-distance travel overseas to have the surgery wasn’t feasible for us so I kept searching and Dr Glenn Gardener’s name popped up and I looked at the date−23 July 2016− Mater Mothers’ Hospital in Brisbane had performed the first fetal surgery in Australia and it was successful!”

Within 24 hours Dr Gardener had assessed Catherine’s case files and spoken with the Harper family.

“We went over to Australia on 19 December for further testing and then came home to have Christmas with our little boy Jackson. On Christmas Eve Dr Gardener called to say we met the criteria for surgery and it was scheduled for 29 December,” said Catherine, “It all fell into place very quickly.”

“Saying goodbye to my little boy before we left was terrible and I was quite emotional going into surgery but at the same time I always felt I was safe with the Mater team… the way they explained everything.”

On 24 January Dr Gardener shared the news with his colleagues that Catherine was doing well following surgery and would be returning home to New Zealand.

“Some good news to kick off 2017! Catherine is now 28 weeks gestation and the ultrasound scan yesterday showed reversal of hindbrain herniation in her baby. Catherine and her baby have had an uncomplicated post-operative course and they will be returning to Auckland by direct flight tomorrow morning,” Dr Gardener said.

The Harpers say they are blown away by the care and kindness of Dr Gardener and the team at Mater Mothers’ Hospital.

“I know Glenn and his team were on annual leave at the time of the surgery and they all said they’d come back for it. We’ve just been so lucky. I don’t know how we’ll ever repay the team at Mater. Now I can say I’ve tried everything possible in my power to help this baby before he’s been born.”

Catherine and Paul arrived safely home in Auckland on 25 January after spending a month in Australia, to face their next challenge of getting baby Harper as close to 37 weeks as possible.

“The other challenge will be not being able to do anything with Jackson. I won’t be able to cuddle him or lift him up. Once he sees my scar he might understand it’s mummy’s ‘ouchy’.”

“I still find it crazy that the surgeons have touched my baby and put him back inside me,” said Catherine, “I saw a couple of pictures and could see just how amazing the surgery actually is. It’s mind-blowing.”

Dr Gardener says 2016 was a big year for Mater’s Maternal Fetal Medicine team.

“The first ever surgery for Australia in July and our first international surgery in December. While this surgery isn’t a cure for spina bifida it can significantly improve the outcomes for babies with spina bifida and I’m delighted we have been able to perform this surgery for a New Zealand family.”

Catherine and Paul are sharing their story with the hope of helping future parents in their position.

“Check out your options and inform yourself; don’t just rely on the professionals. It’s not for everyone and that’s understandable− it’s a big thing. But it felt like the best option for us,” said Catherine. 

“We’re the first Kiwis to have had in-utero spinal surgery for spina bifida. We want to get the word out that there is a pathway for New Zealand families to access this surgery at Mater if they meet the criteria.”

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