One in every 700 Australian babies is diagnosed with cerebral palsy each year yet staggeringly, half of these babies will receieve limited or no specialist early intervention before their first birthday.
Cerebral Palsy Alliance’s (CPA) Early Response Therapy Program is providing solutions for these at-risk babies at a pivotal point in their development, which can reduce the severity and impact of disability for each child.
The program has been supporting families across regional NSW for two years and will now continue over the next two years after receiving more than $220,000 as part of Greater Charitable Foundation’s 2019 funding round.
Cerebral palsy is the most common physical disability in childhood that affects movement and posture. While there is no single cause of cerebral palsy, it is the result of a combination of factors either before, during or after birth that can lead to an injury in a baby’s developing brain.
According to Jo Ford, CPA’s General Manager for Early Childhood Early Intervention and Therapy Services, the vast majority of babies that display signs of cerebral palsy do not receive cerebral palsy specific intervention until after their second birthday while awaiting their diagnosis. It’s a key issue the alliance is addressing.
“Neuroscience suggests that to harness maximum plasticity, intervention should occur before six-months of age. The first two years of a child’s life are therefore critical for cognitive and motor development as the brain is undergoing constant spontaneous plasticity,” Jo explained.
“Early intervention reduces the severity of disability for each baby and child and in turn increases their potential to live a more comfortable, independent and inclusive life.
“Early Response Therapy Program aims to ensure that families can access the therapy their baby needs as soon as possible, to maximise their developmental outcomes, and the health and wellbeing of the entire family unit.”
“Families referred to us will be supported with 30-hours of critical, specialised therapy from highly-skilled occupational therapists, speech therapists and physiotherapists. Specific assessments can support the family with information to inform their child’s NDIS planning, therefore enhancing appropriate levels of funding for each child's needs into the future.”
Over the next two years, funding from the Greater Charitable Foundation will enable more than 35 families across the Hunter, Alstonville, Dubbo, East Maitland, Orange, Tuggerah and Wagga Wagga to receive critical early intervention therapy and support through the program.
Greater Charitable Foundation Chief Executive Officer, Anne Long, said the Foundation, now in its eighth year of giving, is delighted to be supporting CPA and is looking forward to the positive impact the program will have on the development of children born with cerebral palsy.
“Greater Charitable Foundation has a strong and proud tradition of partnering with organisations that provide practical, life-changing initiatives that directly support families and communities. CPA provides such a critical early intervention service that can reduce the life-long impacts this condition can have on children and provide a bright and positive future for them and their families.
“We are exceptionally proud of the positive impact we have made over the past eight years and are looking forward to working with our latest group of partners to help change the lives of those they support.”
Greater Charitable Foundation’s allocation this year of more than $1 million takes its total funding since establishment in 2011 to more than $9 million, which has been allocated to 31 charity partners, impacting more than 32,000 beneficiaries.
CASE STUDY – Rachel and Immi Beeton
Rachel Beeton was 37-weeks pregnant with her second child when she unexpectantly went into labour on Boxing Day 2016. While the nursing staff at Newcastle Private Hospital wheeled her into surgery for an emergency caesarean section, Rachel experienced a placental abruption – a condition whereby the placenta spontaneously separates early from the uterus. At that point the caesarean was no longer an option and she had to deliver naturally.
The problems didn’t end there. Once born, baby Immi had to be fully resuscitated and her APGAR score was only one at birth. She was immediately transferred to John Hunter Hospital’s neonatal intensive care unit (NICU) where she underwent therapeutic hypothermia treatment to reduce potential brain damage and remained there for the first 12 days of her life.
Rachel takes up the story -
Immi’s birth was traumatic for everyone and while she was progressing well over the first couple of weeks of her life, we knew that there was potential for longer-term issues.
It was during this time the doctors performed an MRI on her brain and detected a small area of damage on the left side. It was difficult news to hear but in a sense a relief that it was detected early and we could get on with doing something about it.
When she was three months old, we returned to John Hunter Hospital for a follow-up appointment where they videoed and observed Immi. They were looking for fidgety movement which is typical of a child that age but found this wasn’t as present as they would have liked to have seen. It meant she was at high-risk of acquiring cerebral palsy (CP).
It seemed that we’d already been through so much in a short amount of time, but our journey was essentially just starting.
I knew very little about the condition and what it meant for Immi’s development. There was a real sense of “What do I do now?”. Thankfully, John Hunter Hospital referred us to Cerebral Palsy Alliance. It was a life changer for all of us.
Through their early intervention we were able to start seeing a range of therapists right away. Physiotherapists began working on her gross motor skills and provided plans to address the issues. We also started working with an Occupational Therapist and Speech Pathologist, working in communication and feeding.
It was a fully integrated treatment program whereby the health professionals work together, along with the family, to develop the treatment plan. Critically for us, it was all coordinated by Cerebral Palsy Alliance.
The therapists we worked with provided a clear understanding of what we were facing, what the issues were and what it all meant. I can’t begin to tell you the sense of relief and comfort this provided us, knowing that I had the support of trained professionals who specialise in the treatment of CP.
The early intervention program also ensured we saw the same therapists at each session, which enabled Immi and I to build a level of trust, as well as personal and professional bonds. Visiting the same doctors and therapists on a regular basis also made it much easier for them to make informed decisions about Immi’s plan moving ahead.
It’s been more than two years since we first connected with Cerebral Palsy Alliance. I can’t imagine where we would have been without their support.
As a single mother trying to juggle work and raising two children, the CPA has been wonderful in their ability to provide support – especially. Sometimes it’s nice to hear someone saying, “It’s ok” and provide that reassurance that I am doing the right thing for my child.
The juggle of life has also been difficult. I’ve had to adjust how I work to manage Immi’s therapies, which has come at a financial cost. Without the support of Cerebral Palsy Alliance it would have been challenging to offer Immi the level of therapeutic support she has received.
Some days can be challenging for our family but I have always tried to maintain a positive outlook. I understand that things could be so much worse. Cerebral Palsy Alliance support has helped me with that mindset. They help shift your perception about disabilities and open your eyes to what is possible.
Immi’s progress under the guidance of Cerebral Palsy Alliance has been fantastic but the reality is that it is unknown what physical and cognitive challenges she will face in the future. In the meantime, we will continue to undertake regular assessments and work with her therapists to give her the best chance at life.