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Bringing open fetal surgery for spina bifida to Australian families

Thursday 23 February 2017

Bringing open fetal surgery for spina bifida to Australian families

A new surgical option is bringing hope to Australian families facing the diagnosis of spina bifida: open fetal spinal surgery. 

 Mater Neurosurgeon Dr Martin Wood and Director of Maternal Fetal Medicine Dr Glenn Gardener are two hands of this surgery, amongst a huge multidisciplinary team. They tell us about the surgery and bringing the option to Australian families.
 

The challenges of spina bifida

There are some 5000 adults living with spina bifida in Australia and around 150 babies born with the condition every year.

Dr Wood said spina bifida is a failure of the lower end or part of the spinal cord to form properly.

“The spinal cord starts off in the embryo as a flat plate of cells and has to roll around into a tube and become internalised. And then bone and muscle and skin grow over the top for normal structure and function to occur.”

“In spina bifida that fails to happen in about the third week of pregnancy and the spinal cord is exposed to toxic elements within the uterus. It also prevents the normal growth and elongation of the spinal cord inside the fetus’ body,” said Dr Wood.

Dr Gardener explained this leads to a complex range of problems for the child that can include loss of bladder and bowel function, inability to walk and a build up of fluid on the brain.

“Every person presents with a slight variation and the spectrum is broad. One thing that is universal, is the significant and lifelong challenges these babies and their families face.”
 

What is spina bifida? Dr Glenn Gardener, Dr Martin Wood and Professor David Tudehope
Content supplied by Australian Story

 

The significance of the MOMS study

a chance meeting with a Maternal Fetal Medicine Specialist at a conference started the journey of bringing in-utero spina bifida surgery to Australia.

“Professor Kelly Bennett from Vanderbilt University Hospital was presenting in New Zealand about the MOMS study and the outcomes of in-utero surgery for spina bifida and invited me to observe their program in Nashville,” said Dr Gardener.

“Hospitals in the US have been performing in-utero surgery since it was pioneered at Vanderbilt in 1997. In 2011, the US Government funded the MOMS study comparing the outcomes of repairing the spina bifida defect pre or post birth."

“The major finding was a halving of the need for a brain shunt and doubling the chance of the child walking unassisted.”

Dr Wood said the findings were a game-changer.

“Typically, we have to replace shunts as the child grows or the shunt becomes infected… and the number of anaesthetics a child has in a lifetime certainly correlates with their intellectual development and their overall quality of life.”

The rate of Chiari malformation was also significantly lower when repaired in-utero.

“In Chiari malformation, the back of the brain − the cerebellum − lies towards the neck where the spinal cord is supposed to be which can cause breathing issues. Even in the cases we’ve done in Australia, the malformations that had initially shown on the ultrasound were repaired at birth.”

Dr Gardener and Dr Wood were able to see the difference being made to the lives of children first hand when they travelled to Vanderbilt.

“Not long after that, I had two patients ask about the surgical options in the US. The visa requirements and costs made this too difficult, but surgeons in Belgium offered to help. I went over to learn more about the operation and support those patients as they underwent in-utero surgery and then cared for them after they returned to Australia to deliver,” said Dr Gardener.

“But the travel was a risk parents shouldn’t have to take. It became obvious that if that was to keep happening, we should be offering this surgery in Australia.”
 

The first in-utero spinal surgery in Australia

Dr Gardener said it would be a lie to say it was smooth sailing from there.

“Getting the Vanderbilt team to come to us for our first case was only possible with funding support from Mater Mothers’ Auxiliary and the generosity of a donor in South Australia; in addition to the incredible generosity and support of the Vanderbilt University Hospital team.”

Dr Wood said with close to 40 staff in the room, it felt like doing surgery in a telephone booth.

 “The Mater Education team ran a simulated ‘practice run’ with the US team the day before surgery. None of us had individual doubts about our ability to perform our role in the surgery but with so many people in the room, putting the team together was really critical and it was a really good model.”

Mater-In-utero-surgery-230716_-neurosurgeons-scrubbing-in-for-surgery.jpg

Dr Gardener said in-utero surgery to repair spina bifida before birth is a complex procedure involving two patients at the same time.

“The mothers’ abdomen and womb is opened and the baby’s back is exposed, the spina bifida lesion is carefully dissected by the neurosurgeon and then closed over with the baby’s own skin. After that, the amniotic fluid is replaced and the womb carefully closed so that it is watertight,” said Dr Gardener.

Dr Wood said the building blocks of the procedure are the ‘bread and butter’ of individual specialists.

“For example the delivery of the fetus is very much like Glenn preparing a caesarean section. My part, of repairing the spina bifida defect, is very much like repairing on a baby that is born at term, except smaller. But you put it all together and it’s quite a complicated entity.”

“Clearly there are challenges which are very different to the challenges of a standard surgery because there is a mother and baby, both of whom have to be anaesthetised and operated on.”

Dr Gardener said despite the risks, the first operation went very smoothly.

“There was a sense of elation and relief from both the Mater and Vanderbilt teams. We’ve since performed an additional two surgeries independently, with another scheduled in March."

The journey of bringing open fetal surgery to Mater Mothers' Hospital
Content supplied by Australian Story
 

Meeting unmet needs

In medicine, we are always striving to improve quality of life.

“This procedure does give people an additional choice and it does improve the quality of life of children with spina bifida. If we can do that without imposing unnecessary risk on the mother or baby, then it does offer something worthwhile to these children," said Dr Wood.

Dr Gardener said that parents have been the key driver in bringing this surgery to Australia.

“Parents know if they had this diagnosis in another country they would have access to a surgery to improve their baby’s life. At the end of the day we do this job for patients not for ourselves. If parents are prepared to hop on a plane overseas and take that risk, then it is beholden on us to explore the option of offering this surgery here, “ said Dr Gardener.

“To work in a place like Mater that supports this type of work and supports a huge team of likeminded people… the ethos of the place really permeates this type of work… that’s why I work here.”

Parents Claudine and Dave recently shared their journey with ABC’s Australian Story and millions of parents and future parents around Australia.  Harvey’s journey is one of hope and Mater thanks the family for trusting us to share the story. 

 

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