Fond farewell to Spina Bifida specialist Dr Carolyn West.
Dr Carolyn West set up the first adult spina bifida service in NSW in 1982 in a converted shed on the RPA hospital campus.
More than 35 years later, Dr West is saying goodbye to the hospital and to her patients – some of who she has treated since they were born.
Her retirement from clinical work, almost 50 years after graduating medicine, brings to an end some of the most long-standing relationships between doctor, patient and their families ever seen in Sydney Local Health District.
Dr West, who is a paediatrician and rehabilitation physician, pushed to establish an adult spina bifida service to cater for the first cohort of patients with complex spina bifida surviving childhood.
Up until the 1960s, most of these children died, however the introduction of shunts to treat hydrocephalus (water on the brain) meant an increasing proportion achieved adulthood.
However, there were multiple case reports of people with spina bifida dropping out of services once they left paediatric care only to later re-represent to adult emergency departments in crisis, often with severe preventable problems such as infected decubitus ulcers and renal failure.
The establishment of the adult clinic meant the patients she had been treating in the Spina Bifida Unit at the Children’s Hospital at Camperdown could access specialist care once they turned 18.
“My oldest patients are now in their 50s. They are the pioneer group,” Dr West said.
More incredibly, Dr West’s involvement with some families began in the womb, with advances in antenatal testing in the 1990s allowing the identification of neutral tube defects at 18 weeks gestation.
“Our relationship with the parents then started from 18 weeks… with more motivated and informed parents, the outcomes are better.”
Spina Bifida describes a group of spinal abnormalities that occurs within the first four weeks of a pregnancy when the baby’s developing spine (neutral tube) fails to close properly, leaving the spinal cord nerves exposed and damaged.
Almost always, the nerves supplying the parts of the body located below the level of the exposed area do not function properly, leading to a range of motor and sensory problems, and disturbance of bodily functions, such as bowel and bladder.
The condition occurs in 1 in 1000 pregnancies, although there has been a 15 per cent decrease in neutral tube defects since the introduction of mandatory folic acid fortification in wheat flour for bread-making in 2009.
The RPA clinic sees about 400 patients, many of who travel from across NSW. Dr West says her main area of interest is providing the best medical care within the context of the holistic needs of the individual patient and their circumstances.
She also has a keen interest in advocating for people with disabilities to have the opportunity to enjoy healthy, happy and productive lives within the community.
Dr West retired as Head of the Spina Bifida Unit at the Children’s Hospital at Westmead, which had transferred from Camperdown in the mid-1990s, in 2011. With her appointment as Visiting Medical Officer at RPA ending in April, Dr West will continue as a Professional Member of the Guardianship Tribunal of NSW.
“I thought it would be hard to leave the children’s hospital; I think this may be a little harder,” she said.
“I’ve said to some of the patients, I’m going to be checking up on you; I want to know you are going well.”
Rehabilitation physician Dr Abraham “Patrick” Arulanandam has taken on responsibility for the adult clinic. He says Dr West’s long-standing association with her patients is “quite unique” as paediatricians generally work only with children and adolescents.
“She would be the last of this generation to see patients from childhood onwards,” Dr Arulanandam said.
One of the fondest farewells was with Tyson Saunders, who Dr West first saw as a newborn 30 years ago at the Children’s Hospital at Camperdown.
He travelled from his home on the Central Coast to see Dr West at her last clinic.
“I have grown up with her, she’s been a constant in my life,” Mr Saunders said.