Feature “Raising a
Feature “Raising a child with spina bifida has no rule book, as each child is so unique in their range of disability and the complexity it inflicts on their bodies.” In the face of this breakthrough, we contacted a prominent member of the spina bifida community for comment. Rose Fazio is a board member for the Spina Bifida Foundation of Victoria and her 12-year-old son, Aaron, has spina bifida. “Raising a child with spina bifida has no rulebook, as each child is so unique in their range of disability and the complexity it inflicts on their bodies. So many aspects are affected, with particular mention to the brain through hydrocephalus and the Arnold Chiari Malformation, and the kidneys and bladder where inactive nerves render a person incontinent. Physically, the body is left with parts that are not wired to work and paralysis to the limbs. Depending on where the spina bifida is determines which mobility challenges will be encountered for life. Faced with all these complexities and the lifelong care it requires, individuals with SB and their families welcome any medical research and progression in its care, and the latest in utero surgery is something to follow carefully. This option was not available to me 12 years ago. The procedure itself is still new, and although being practised in the US and parts of Europe by specialised surgeons, carries a great set of benefits and costs that need to be assessed by each family bringing a baby with SB into the world. The proven benefit of reduced 8 Independence Australia
incidence of hydrocephalus is wonderful as it reduces the need for a shunt, but at this stage this is the only significant benefit demonstrated in recent studies highlighted at the World Congress for SB. Other significant benefits that families would be looking for include reduced permanent paralysis and a level of continence of the bowel and bladder. The risks associated with the in utero surgery include premature birth and the risk that the mother may not be able to carry additional pregnancies. I think that as a first-class medical country we should make available this surgery so that a family can have the choice to go ahead with surgery if the benefit can improve the medical outcome. I am also encouraged that the medical world is spending money on research on a disability that is so little-known within the general public and government departments. With awareness and knowledge comes informed doctors, parents and individuals who can make better decisions about the long-term wellbeing and financial support that SB needs.” To find out more about more about spina bifida and how you can create awareness, please phone the Spina Bifida Foundation of Victoria on 03 9663 0075. Inform – Spring 2017 9
