For the first time in Australia, a child has received an infusion of their own umbilical cord blood to treat cerebral palsy (CP).
As widely reported by the media, the therapy – not yet approved as a standard treatment for CP anywhere in the world – was administered to Zara, a 6-year-old with CP, at Monash Children’s Hospital last month.
The Therapeutic Goods Administration (TGA) granted Zara compassionate access to the therapy under the Special Access Scheme.
‘The stars aligned for Zara,’ said Professor Michael Fahey, the Head of Paediatric Neurology at Monash Children’s Hospital.
‘She had cord blood stored at birth and had a good dose available; she was the right level of cerebral palsy – she was still walking; her parents were very keen to have this treatment; and she was young enough that we could infuse the cells and know that she would get the maximum benefit.’
CP is the most common physical disability in children. It is caused by damage to the developing brain.
Global research has found that cord blood treatment can help repair a brain injury and support improvements in gross motor skills for some children with CP.
‘Based on the studies, we are expecting that there will be a level of improvement in the way that Zara walks, the way that she communicates, and the way she interacts with others.’
While it can take several months to see any improvements after treatment, Zara’s parents say they are already seeing some of the benefits.
‘Everyday tasks are becoming just that little bit easier. She’s finding it easier to balance. She is finding she can run further, and she is climbing at heights she has not climbed before,’ said Zara’s mum, Michelle Forrest.
Care close to home
The support, research and advocacy organisation Cerebral Palsy Alliance estimates hundreds of Australian families have travelled overseas to access cord blood therapy treatment for cerebral palsy privately whilst is has not been available locally.
It was important to Zara’s parents that she receive care in Australia.
‘We know there are lots of families who have traveled overseas for this treatment. But we genuinely believe in having access here on home turf, in the hospitals that we know, with the treating teams that we trust and that we rely on every day,’ said Ms Forrest.
It took a year to plan and obtain approvals for Zara’s infusion, coordinating the treatment between Monash Children’s Hospital, Cerebral Palsy Alliance, Hudson Institute of Medical Research and Cell Care.
Zara’s umbilical cord blood, collected at birth and stored with Cell Care cord blood bank, was transferred to Hudson Cell Therapies in the Monash Medical Precinct, where the team in the lab processed the cells and prepared her infusion.
‘We created Hudson Cell Therapies for exactly this purpose, to facilitate trials and treatments that bring the latest innovations in cell therapies to Victoria’s largest health service,’ said Professor Elizabeth Hartland AM, Director and CEO of the Hudson Institute of Medical Research.
The big day
On the day of Zara’s treatment, the cord blood was hand-delivered from the Hudson lab to specialist nurses at Monash Children’s Hospital Cancer Centre for infusion.
After preparation, the cord blood was delivered via a drip in Zara’s arm, much like a regular blood transfusion. During the 30-minute infusion, Zara was engaged in play therapy and accompanied by her parents, Fiona and Michelle, and younger sister, Tilly.
‘The procedure itself was really quite straightforward for Zara. The team at Monash Children’s Hospital were incredible and took the time to understand what she needed and to support her through the process. Despite being a little nervous, she was very relaxed during the treatment, and we felt very supported as a family,’ said Ms Forrest.
Zara receiving her cord blood infusion at Monash Children’s Hospital Cancer Centre in April.
The infusion was completed safely, and Zara’s progress will be monitored in the months and years ahead, as part of her standard clinical care.
‘The procedure was meticulously planned to the minute, and we didn’t encounter any surprises. Staff across neurology and haematology-oncology at Monash Children’s Hospital collaborated closely to provide this treatment, and I am really proud of their work,’ said Prof Fahey.
Treatment access
Cerebral Palsy Alliance hopes Zara’s case will serve as a stepping-stone towards access to cord blood treatment for other children with CP in Australia.
‘Umbilical cord blood for cerebral palsy is an evidence-backed treatment option, proven to be safe and improve movement skills for children,’ said Dr Megan Finch-Edmondson, Senior Research Fellow and Program Lead at Cerebral Palsy Alliance.
‘We want to see more children, like Zara, have the opportunity to be treated with cord blood in Australia and not need to rely on overseas treatment options.’
Dr Megan Finch-Edmondson from Cerebral Palsy Alliance
Zara’s parents chose to store her cord blood ‘just in case’. Their decision six years ago made her treatment a possibility.
‘We are pleased that Zara’s family made the important decision to store her cord blood at birth, paving the way for this novel infusion to happen,’ said Tom Johnson, the Marketing Director at Cell Care.
‘We have been working with Cerebral Palsy Alliance and Monash Children’s Hospital for many years to progress the treatments available to children in Australia with CP and are hopeful that this will springboard treatment options for other children with CP in Australia.’
Collaborating in care
The Victorian Health Minister, Mary-Anne Thomas, and the family’s local member of parliament (MP), Paul Mercurio, were among those who advocated for Zara’s treatment.
Yesterday, they spent time with her and her parents at Monash Children’s Hospital and met some of those involved in her treatment.
‘Victoria’s public health system is world leading and this remarkable, pioneering treatment that Monash Health has provided to little Zara, is proof of that,’ said the Minister.
‘I want to congratulate the team at Monash Health for their incredible work, and I also want to pay tribute to Michelle Forrest for her tireless and relentless advocacy on behalf of her daughter, Zara,’ said Paul Mercurio, the member for Hastings.
Victorian Health Minister Mary-Anne Thomas with Zara’s parents and representatives from Monash Health, Monash Children’s Hospital, Cerebral Palsy Alliance, Cell Care and Hudson Institute of Medical Research.
Zara’s parents Michelle and Fiona, Prof Michael Fahey, Zara and Paul Mercurio MP (left to right)
The family expressed thanks to all those involved in their daughter’s treatment.
‘Everyone involved took a personal interest in supporting this cause and went above and beyond to make it a reality,’ said Ms Forrest.
For more information about cord blood therapy for CP, visit: www.cerebralpalsy.org.au/advocacy/umbilical-cord-blood