“Red Noses make me giggle,” Ben, 4 years.
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 were told he would potentially not have any movement of his legs. However, Benjamin can walk with a walker and crutches and is cognitively meeting all his milestones. He is such a happy, bubbly and gentle boy.
“He loves playing with his older brother Jackson. Benjamin is a little miracle and we are so lucky to have him,” Catherine says.