Evolution of rare diagnostic service

The Malignant Hyperthermia Unit was founded by a team of dedicated clinicians twenty years ago in a humble storeroom at The Children's Hospital at Westmead (CHW).  

Now, the rare diagnostic service will have its own fit-for-purpose space in the new Paediatric Services Building (PSB) – continuing the legacy of one of its founders, Specialist Paediatric Anaesthetist Dr Neil Street, who passed away in late 2020. 

Malignant Hyperthermia is a rare, life-threatening condition triggered in a small percentage of patients by exposure to general anaesthetic medications. Patients are only aware of its presence if they or a relative suffer an adverse response.   

The condition sparked the interest of the late Dr Neil Street AM and doctors David Baines AM, Margaret Perry and Mark Lovell in 2002.

They became dedicated to researching and diagnosing the then little-known disease. 

In his 32-year tenure at the hospital, Dr Street touched thousands of patients' lives and helped boost the Unit to international recognition, despite limited resources.   

His wife, Cathy Street, recalled in addition to his clinical work, Dr Street dedicated numerous hours of his own time to research, making the diagnostic equipment himself and creating awareness.    

He was an extremely humble person, who never did anything by halves, expecting no more from others than what he would do himself," Cathy Street said.  

Cathy recalled that Dr Street began the testing in a storeroom, before expanding to his office.

"In this office was all of his equipment needed for his research and everything required for his routine clinical work,” said Cathy.  

“He even had a mattress rolled up because he often just spent the night there."  

Margaret Perry worked alongside Dr Street in this office space, investigating the genetic side of Malignant Hyperthermia. 

The future of the Malignant Hyperthermia Unit   

Today, Dr Gail Wong and Dr Victor Chan operate the Malignant Hyperthermia Unit from a temporary lab space.  

By 2025, the team will have access to a fit-for-purpose space on the perioperative floor on the fourth level of the PSB.  

The Malignant Hyperthermia Unit is one of only four of its kind across Australia and New Zealand. Staff test patients from across New South Wales, Queensland, and Canberra through genetic analysis or muscle biopsy.   

Dr Gail Wong described the move as a "big win" that will allow the service to continue to advance.    

It is very important for the unit to have its own permanent area, which is fit for purpose, as this eliminates concerns that we can no longer offer a service to our patients," Dr Wong said.  

“It will also be larger than any space we've had and be appropriately designed to house the equipment required to facilitate this essential service."   

Dr Wong said the development "would mean a lot to Neil," and "he would be happy and relieved that it has a permanent home."    

"Neil Street is the reason this unit exists at all, and his legacy is the reason it will exist in the new building," Dr Wong said.    

"He was many things to many people, but above all, he was universally loved. It is this enduring love and respect for him that has driven this project," Dr Wong said.

The opening of the new facility will be a very emotional experience, and it is regretful that Neil will not be there to see it," Cathy Street added.   

For more information about the redevelopment go to: https://westmeadkidsredevelopment.health.nsw.gov.au