For Claudine and David, Baby Harvey is a sign of all that is good in the world – their little baby boy of hope – made possible, in part, by Dr Glenn Gardener and his team at Mater Mothers’ Hospital Brisbane.
This is the family’s fourth baby. And their third baby diagnosed with spina bifida.
Almost four years ago Claudine and David were blessed with beautiful Eliza, and then two subsequent pregnancies, baby Sophie in 2014 and baby Willow, the following year. Devastatingly, both Sophie and Willow were diagnosed with spina bifida at their 20 week scans.
Spina bifida is a condition where the lower part of a baby’s spine is open and it affects 1 in every 2000 pregnancies in Australia. 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.
"It was really terrible because we felt like we didn’t have any time and we didn’t know anything about spina bifida. The information we were given was very negative… so we had visions of their life which may have been very different to their actual condition," David said.
“And of course, a year later, it was an incredibly rude shock with Willow, to find out the same thing,” said Claudine.
The family made the difficult decision not to go ahead with the pregnancies.
Then in July 2016, Claudine and Dave were shocked by the diagnosis of their third pregnancy affected by spina bifida.
“The first question I asked my doctor in Sydney was, ‘is there anything yet? Please tell me there is something new?’ She said ‘well actually a colleague, Dr Glenn Gardener, is doing Australia’s first in-utero surgery in a couple of weeks’,” said Claudine.
Dr Gardener, Director of Maternal Fetal Medicine at Mater, and his team had been preparing to bring in-utero surgery to Australia, since learning about the results of a seven year trial in the US (MOMS).
“The MOMS trial demonstrated clear benefits for babies who undergo fetal surgery to treat spina bifida, in comparison to surgery post-birth, which is the option Australian parents have had to date,” said Dr Gardener. “The major and most exciting finding was the halving of the need for the child to have a brain shunt; in addition, a child who had fetal surgery in comparison to surgery post-birth was twice as likely to walk without the need for assistance.”
Claudine said she felt uplifted from the first meeting with Dr Gardener. “He was one of the first doctors we spoke to who was even remotely positive about spina bifida. But he was also realistic – the first thing he said was ‘I’m not going to talk you into this… its risky’. But it didn’t have this massive negative undertone. Being our third affected pregnancy, it was nice to hear something good.”
In light of their previous experiences, Dave said they felt fortunate to be given the opportunity to have their baby and for the baby to have a better shot at life.
“With this baby being the third affected, we felt so informed. We were ready for this. It felt like a sign that the surgery was here in Australia; the timing. There were so many things that lined up that we thought ‘well this is meant to be for us’.”
Dr Gardener said he found Claudine and Dave extremely resilient in their ability to work through the position they were in.
“They had already moved to a point well beyond parents diagnosed for the first time. They’d been through it and made difficult decisions but it had taken its toll. How can you even imagine what that’s like? They wanted some hope that there was something better than where they’d been before,” said Dr Gardener.
“After we’d performed the first case in Australia we were in a good position to consider Claudine for surgery.”
Then, in late date 2016, Claudine became the second mother to undergo in-utero surgery for spina bifida in Australia.
“On the day of the surgery I was more nervous than I would be for other operations. But we shouldn’t have had any lack of confidence because the team were ready and it all went really well,” said Dr Gardener.
Dave and Claudine returned home to Sydney in the weeks following the surgery to prepare for Harvey’s arrival and, at 33 weeks, little Harvey ‘declared himself to be born’.
“I think the first message from Dave was a photo of baby Harvey – he looked fantastic– and Dave said Claudine was doing well,” said Dr Gardener. “Whilst that’s early, Harvey didn’t show early problems with prematurity and had good leg function. To be 2.2 kilos at 33 weeks and to have gone through what he had gone through was amazing.”
With baby Harvey now thriving at home with adoring big sister Eliza, Dave and Claudine are generously sharing their journey with Australian Story.
“A lot of healing comes from sharing stories. There are lots of people out there having a terrible time… and I haven’t met anyone that I could share that experience with and I would have liked that,” said Claudine.
“We don’t want people to think it’s an easy decision. Our very optimistic and very positive decision is coming from a place of significant loss. But it’s turned from being a sad story to one that is very hopeful.”
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