Benjamin lives with spina bifida myelomeningocele and hydrocephalus.
Ben is 1 of approx 700 babies who are born preterm each year. He was also the first unborn Kiwi to undergo surgery for spina bifida.
Benjamin was diagnosed with Spina Bifida Myelomeningocele and Hydrocephalus at his Mum Catherine’s 20-week antenatal anatomy scan. The family knew they had a battle on their hands but were determined to do everything they could for their little boy.
Ben and Mum qualified for a ground-breaking fetal surgery in Brisbane, Australia (Mater Mother’s Hospital) to help close the opening in his spine. At 24 weeks gestation, he was the first unborn kiwi and 3rd overall in Australasia to have this surgery.
Due to some complications post-surgery, Benjamin was born at 33 weeks gestation. In the first week of his life, he had an MRI scan and a very large fluid-filled cyst called a syrinx was found in his neural tube in his spine. Untreated this may have caused tetraplegia so a ventriculoperitoneal shunt (VP shunt) was inserted in his brain to relieve the pressure of the syrinx. Since then he has had three shunt revision surgeries, a decompression, and a syringo arachnoid shunt placement.
During the early stages of his diagnosis in pregnancy, Ben's family was informed that he might not have any movement in his legs. However, Benjamin can walk with a walker and crutches and is meeting all his cognitive milestones. His family now has hope that research funded by Cure Kids will alleviate their ongoing concerns about tube blockages.
The research is led by Professor Simon Malpas and a team at the University of Auckland. They are developing a tiny implantable device for remotely monitoring a child's brain pressure. This tool has the potential to reduce hospitalisations and radiation exposure from CT scans, greatly relieving parents' anxiety about their children's care.
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