In Megan’s words, “Bennett’s story is a big one.”
Bennett is Megan and Doug’s much adored and deeply wanted third child. “He completes our family.”
Megan had a textbook pregnancy and an uneventful birth, with no interventions; what she describes as a very “vanilla” experience. Three and a half days after giving birth, Megan and Bennett were discharged from hospital and returned home. Zoe and Winnie were thrilled with the new addition to their family, and Megan and Doug couldn’t wait to get to know their little boy and watch him grow up.
Two days later, their lives changed in an instant.
On an otherwise ordinary day, Megan was home with Bennett, cradling him in her arms, when she felt his tiny body stiffen and saw his pupils dilate. She watched as his eyes began to twitch. Then he stopped breathing.
Megan, an emergency department nurse, knew immediately something serious was happening. While giving her precious baby CPR, she raced outside and called for help from her neighbours. While they waited for the paramedics, Bennett had three more seizures.
They were rushed to Campbelltown Hospital, where Bennett was placed on life support. Eventually, his seizures stopped, but within an hour, they returned, and Bennett was urgently transferred to the Paediatric Intensive Care Unit (PICU) at the Sydney Children’s Hospital in Randwick.
Bennett underwent a range of tests to try and determine what had caused his seizures. His head CT came back normal, but a lumbar puncture revealed E. coli meningitis. His medical team suspected the infection stemmed from a minor kidney malformation diagnosed at birth. Bennett began a three-week course of antibiotics to treat the infection.
When it came time to wean Bennett off the ventilator, his doctors found he wasn’t breathing as they had expected. As the heavy sedatives were reduced, his seizures returned. This was more than an infection.
A brain MRI revealed that Bennett had suffered a massive stroke, affecting most of the right-hand side of his brain and part of the left-hand side. The MRI also showed several abscesses. It became a waiting game to see if Bennett would survive.
Devastatingly, a follow-up MRI days later showed that Bennett’s condition had worsened. Megan and Doug faced a heart-breaking choice: a complicated and risky brain surgery, which would likely be fatal, or to palliate Bennett, allowing him a gentle and planned death, surrounded by family and love.
Ultimately, Megan and Doug chose what they felt would be the most comforting option. They made the decision to withdraw life support and shower Bennett with love as he passed.
Three weeks after entering the PICU, Bennett’s ventilator was switched off. His family was told they would have, at most, three hours left with him.
To everyone’s surprise, and cautious hope, Bennett was still alive three hours later, breastfeeding in Megan’s arms without support. It was a complete emotional whiplash, having prepared to say goodbye, Megan and Doug now found themselves holding their baby who was still here, still fighting, and seemingly not ready to go.
Two days went by. Then three. Megan and Doug received astonishing news: Bennett was no longer considered palliative. He could begin rehabilitation.
To start Bennett’s rehab journey, he was referred to the allied health team at Campbelltown Hospital, who Megan describes as “dedicated and passionate.” But with stretched resources, Bennett could only see his therapists around once a month. For the best possible chance of recovery, he needed more regular and intensive therapy.
When Bennett was three months old, Megan and Doug began applying for National Disability Insurance Scheme (NDIS) funding. They knew it would be a long process. In the meantime, they were referred by Sydney Children’s Hospital to Cerebral Palsy Alliance (CPA). Three months later, when Bennett was six months old, they attended their first appointment with CPA’s multidisciplinary early intervention team at the Prairiewood Centre. Thanks to the generosity of CPA donors, Bennett was able to access the Early Response Therapy Program, which provides early intervention therapy for babies at risk of, or diagnosed with, cerebral palsy (CP) before they have received NDIS funding, at no cost to families.
Through the Early Response Therapy Program, Bennett accessed physiotherapy, speech pathology, and occupational therapy on a weekly and biweekly basis, to maximise his young brain’s ability to rewire itself.
“Accessing the Early Response Therapy Program was life changing. The support and consistency of Bennett’s team made a huge difference,” said Megan.
Despite the advances Bennett was making with his dedicated team, the family encountered challenges in supporting his complex needs at home. As Bennett grew, Megan noticed it was becoming increasingly difficult to help him with everyday tasks like bathing and feeding, as he lacked the muscle control to support his own head or body.
Once again, through the incredible generosity of CPA’s donors and fundraisers, Bennett’s family was able to purchase specialised equipment to help keep him safe and happy at home, including a supportive bath chair and a custom seat to support his posture, which Megan said, “truly changed his and our lives.”
Bennett also received funding for a customised pram, which allows Megan to take him out jogging, something they both love.
Bennett was formally diagnosed with CP in September 2024. In November, he finally received NDIS funding, seven months after beginning the application process.
“Bennett continues to amaze everyone with how well he is doing. From his neurosurgeon’s devastating initial diagnosis, when we were told that Bennett would be blind, tube fed, and only able to move his right foot, to today, the change has been astonishing. Bennett can see, he feeds normally, and miraculously moves ALL his limbs! We still have a lot of work to do, and there are more mountains for Bennett to climb, but we are so grateful to have the team at CPA by our side as we do this.”
“The funding for early intervention care at CPA really does change lives. It creates opportunity where there may have been none. It gives children the best chance to live a full and beautiful life.”
Megan shared her story at the Vitocco Charitable Foundation Golf Day in March 2025, which raised funds for the Early Response Therapy Program for babies from the Campbelltown/Macarthur region accessing services at CPA’s Prairiewood Centre.
“Thank you for your generosity towards CPA and especially Prairiewood. There are so many incredible people within our community whose lives will be changed because of it.”
