Cerebral palsy rates falling in Australia

Cerebral Palsy Rate Beginning To Fall

Cerebral palsy rates falling in Australia

Recent figures suggest that the rate of babies born with cerebral palsy — steady for the last 60 years — may be falling.

Cerebral palsy is a nonprogressive disorder of movement or posture. Since 1997, its severity has been measured by a technique which allows thorough classification.

Diagnosis now includes problems with movement, sensation, cognition, communication, perception, behavior and seizures. There is no known cure but occupational and speech therapy are often beneficial.

Surgery can be used to loosen tight muscles and release fixed joints.

In developed countries, the rate of cerebral palsy is about 2 to 2.5 per 1,000 live births. The United Cerebral Palsy (UCP) Foundation estimates that nearly 800,000 children and adults in the United States are living with cerebral palsy. About 10,000 babies are born with cerebral palsy each year.

The condition is 20 to 80 times more common among infants born weighing less than 3.3 pounds (1,500 grams) — known as very low birth weight (VLBW).

Improved care in neonatal intensive care units has led to higher survival rates for these babies, many of whom have brain damage or defects to the nervous system.

A team led by Dr. Mary Jane Platt of Liverpool University, UK recently investigated changes in cerebral palsy rates. They looked at data recorded at 16 European cerebral palsy centers from 1980 to 1996, all using a standard definition. Information was available on the children up to the age of 4 years.

The team found that the rate of cerebral palsy in very low birth weight infants — those weighing less than 3.3 pounds (1,500 grams) — and those born at less than 32 weeks’ gestation dropped significantly, from six percent of live births in 1980 to four percent in 1996. This was in spite of an increase in VLBW babies, a drop in infant deaths, and a rise in multiple births.

However, the drop occurred mainly in infants between 2.2 and 3.3 pounds (1,000 and 1,499 grams). Lighter babies only began to show a slight fall in cerebral palsy risk towards the end of the time period studied.

In the Jan.6, 2007 edition of The Lancet, the team noted that the decline was due to a drop in bilateral spastic cerebral palsy, generally the most severe type, and was probably due to improved care at and around the time of birth. Dr.

Platt said that VLBW babies “now have a better chance of survival than previously, and more importantly, a better chance of survival without severe neurological impairment, which demonstrates that improvement in neonatal care has not resulted in increased survival at the cost of substantial morbidity.”

In a commentary, experts from Case Western Reserve University in Cleveland, Ohio said the findings are consistent with their research on infants weighing less than 2.

2 pounds (less than 1,000 grams) born between 2000 and 2002. But they added that “despite the encouraging decrease in the prevalence of cerebral palsy there is no cause for complacency.

Cerebral palsy is associated with major disabilities.”

In the current study, many of the children were unable to walk or had “severe mental retardation” (i.e., IQ less than 50). “Therefore every effort needs to be invested in the prevention of preterm birth and its associated brain injury,” they concluded.

Other research teams in the UK, Denmark and Sweden have found evidence that the cerebral palsy rate among VLBW infants has begun to fall, but studies from centers in Australia and Emory University, Atlanta have not shown a fall.

Sarah Winter, M.D., and colleagues at Emory looked at the rate of cerebral palsy in Atlanta from 1975 to 1991. They found a “modest increase” from 1.7 to 2.0 per 1,000 babies who survived for at least a year.

“This trend was primarily attributable to a slight increase in cerebral palsy in infants of normal birth weight,” they explain. “No change was seen in low birth weight and very low birth weight infants.”

So what can be done to reduce cerebral palsy rates in the future? Not a great deal, says Steven L. Clark, M.D. of the University of Utah.

After investigating possible links to fetal heart rate monitoring and cesarean deliveries, he concludes: “Except in rare instances, cerebral palsy is a developmental event that is unpreventable given our current state of technology.”

References

Platt M. J. et al. Trends in cerebral palsy among infants of very low birthweight (more than 3.3 pounds) or born prematurely (less than 32 weeks) in 16 European centres: a database study. The Lancet, Vol. 369, January 6, 2007, pp. 43-50.

Hack M. and Costello D. W. Decrease in frequency of cerebral palsy in preterm infants. The Lancet, Vol. 369, January 6, 2007, pp. 7-8.

Winter S. et al. Trends in the prevalence of cerebral palsy in a population-based study. Pediatrics, Vol. 110, December 6, 2002, pp. 1220-25.

National Institute of Neurological Disorders and Stroke

Clark S. L. and Hankins G. D. V. Temporal and demographic trends in cerebral palsy — Fact and fiction. American Journal of Obstetrics and Gynecology, Vol. 188, March 2003, pp.628-33.

Cerebral Palsy Rate Beginning To Fall

Source: https://psychcentral.com/lib/cerebral-palsy-rate-beginning-to-fall/

Cerebral Palsy Associated Disorders

Cerebral palsy rates falling in Australia
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Children with cerebral palsy generally have a number of medical conditions associated with the disorder. Known as associated disorders or associated conditions, almost all children with cerebral palsy have at least one health issue caused by or connected with cerebral palsy.

Seizures

Seizures are a common associated disorder of cerebral palsy. According to the Centers for Disease Control and Prevention (CDC), around 35% of all children with cerebral palsy will experience seizures. [1] There are different types of seizures, and the symptoms will depend upon what form the child experiences.

When a child experiences a seizure, it’s due to electrical activity misfiring in the brain. Some of the various reasons misfiring occurs are due to brain damage, head injuries, dehydration, infections, tumors, and genetic factors.

There are numerous different types of seizures, such as:

  • Absence seizures: Children with absence seizures may stare into space and have small and subtle body movements, such as eye blinking and lip-smacking.
  • Atonic seizures: Children with atonic seizures have a temporary loss of muscle control and may collapse onto the floor without warning.
  • Clonic seizures: Clonic seizures are marked by jerking muscle movement in the arms, face, and neck.
  • Myoclonic seizures: Children with myoclonic seizures will have temporary jerking in the arms and legs.
  • Tonic-clonic seizures: Tonic-clonic seizures are the most severe type of seizures, marked by body shakes, loss of consciousness, the body stiffening, and in some instances, loss of bladder control.

Dysphagia

Dysphagia is a medical term that simply means difficulties with swallowing. Children with cerebral palsy are at risk of dysphagia due to poor muscle and motor function control. [2] Symptoms may include:

  • Inability to swallow and/or pain when trying to swallow
  • Regurgitation
  • Heartburn
  • Feeling stomach acid in the throat
  • Unusual weight loss
  • Hoarse voice
  • Food stuck in the chest area and/or throat
  • Gagging and coughing when attempting to swallow
  • Drooling
  • Delayed (or sometimes absent) swallowing reflex
  • Back pain
  • Sore throat

It’s important to work with your child’s physician when addressing swallowing issues. Oftentimes, it’s recommended that the child sees a team of healthcare professionals, including a dietician, occupational therapist, and in some cases, a dysphagia specialist.

Vision Problems

Children with cerebral are at risk of vision problems such as Cerebral visual impairment (caused by brain damage), strabismus (caused by eye issues), and hyperopia (long-sightedness). [3] Pediatricians recommend that you get your child’s vision as early in life as possible, followed by regular checkups.

Vision problems can create a number of its own associated disorders, including:

  • Impaired learning abilities
  • Accident-prone due to vision issues
  • Difficulties with learning to read and write

Cognitive and Behavioral Issues

Not all children will experience cognitive issues, but a scientific study on cerebral palsy published in Disability and Rehabilitation (Volume 28, Issue 4, 2006) states that “a large proportion” of children with CP will have some form of cognitive impairment. [4]

Cognitive impairment doesn’t mean your child lacks cognitive functioning. On the contrary, a child with cognitive impairment still has cognitive functioning but has an impairment, which can range from mild to severe.

Common cognitive  and behavioral issues (not all children will experience each issue) associated with cerebral palsy include:

  • Attention deficit hyperactivity disorder (ADHD)
  • Challenges with behavior
  • Emotional problems (inability to connect with others emotionally)
  • Psychological issues
  • Depression, anxiety, and mood swings
  • Problems with comprehension and decision-making skills
  • Memory and learning issues
  • Recognition issues

Oral Health Issues

Cerebral palsy doesn’t cause mouth abnormalities or deformities, but it can cause oral issues, such as excessive gagging, problems with drinking and eating, gingivitis, involuntary cheek and tongue biting, and more.

According to the U.S. National Institutes of Health, studies indicate “that the more severe the neurological insult in children with CP, the higher is the risk of dental disease.” [5]

Other conditions associated with cerebral palsy and oral health include:

  • Tooth decay and cavities
  • Teeth grinding while sleeping
  • Drooling
  • Abnormal alignment in the upper teeth and lower teeth
  • Mouth trauma

Since children with cerebral palsy have a difficult time with brushing, flossing, and keeping their teeth clean, it’s especially important that they see a dentist (preferably a dentist with experience with special needs children) on a regular basis for cleanings and to check for dental problems.

Digestive Issues

Children with cerebral palsy may have long-term digestive issues. Common digestive issues include:

  • Constipation
  • Incontinence
  • Issues with swallowing and/or sucking
  • Unusual weight gain or weight loss
  • Bladder infections
  • Vomiting
  • Unusual fatigue
  • Aspiration

Skin Conditions

Skin conditions often affect children with cerebral palsy due to excessive drooling and the inability to wash their hands and faces correctly, change their bedsheets, and perform other tasks to stay hygienic. Accidents and injuries can also cause skin conditions, but these issues are non-infectious and will generally heal on their own.

Keep your child as clean and as safe as possible to avoid potential skin issues.

Problems that may arise for children with cerebral palsy include:

  • Skin infections and irritations
  • Skin ulcers
  • Ringworm
  • Staph infections
  • Boils and pimples
  • Impetigo

Respiratory Issues

Difficulties in swallowing, low activity levels, excessive drooling, blocked airways, and the inability to cough are among a few of the various reasons that children with cerebral palsy may experience respiratory issues.

Around “30% of children with cerebral palsy [have] respiratory complications,” according to a study published by the U.S. National Institutes of Health. [6]

There are numerous respiratory conditions associated with cerebral palsy, including:

  • Bronchitis
  • Pneumonia
  • Asthma
  • Aspiration Pneumonia
  • Chronic lung disease

Behavioral and Emotional Problems

One in four children with cerebral palsy will experience some form of emotional and/or behavioral problems. These issues depend on how severe your child’s other associated disorders are. For example, children with intellectual disabilities and severe physical disabilities are more prone to develop emotional and behavioral problems.

Examples of emotional and behavioral problems include:

  • Withdrawing from social activities
  • Arguing with peers
  • Acting out in class
  • Quick to anger
  • Depression
  • Anxiety

Physical and Mobility Issues

Physical and mobility issues are synonymous with cerebral palsy.  The issues can range from mild spastic movements to more severe issues such as being unable to walk without assistance or needing a wheelchair to get around. Physical and mobility issues also depend on the type of cerebral palsy the child has, such as spastic, athetoid, ataxic, etc.

Autism

Around 7% of children with cerebral palsy have autism, a much higher rate than the 1% of children without cerebral palsy who develop autism. [7] There are various forms of autism, ranging from mild to severe.

Sleep Issues and Disorders

Sleep issues are a common occurrence among children with cerebral palsy, usually due to associated health problems with cerebral palsy are the main reason for sleep issues and disorders. The most common health issues that contribute to sleep issues include muscle spasms, pain, drooling, skin ulcers, epilepsy, and gastrointestinal reflux disorder (GERD). [8]

ADHD

Children with cerebral palsy are at risk of also having attention deficit hyperactivity disorder (ADHD) when compared to non-disabled children. [9] ADHD is marked by impulsiveness and hyperactivity, and/or lack of focus, forgetfulness, making careless errors, trouble turning in school work on time, and more.

Some children are impulsive and hyper, while others are chronically inattentive. Most kids with ADHD, however, are both hyperactive and impulsive, as well as inattentive.

  1. Data and Statistics for Cerebral Palsy. (2019, October 31). Centers for Disease Control and Prevention.
    Retrieved from: https://www.cdc.gov/ncbddd/cp/data.html
  2. Cerebral palsy dysphagia: a systematic review. (n.d.). SciELO – Scientific Electronic Library Online.
    Retrieved from: https://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-18462017000400565
  3. Visual disorders associated with cerebral palsy. (n.d.). PubMed Central (PMC). National Institutes of Health.
    Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1039711/
  4. The epidemiology of cerebral palsy: Incidence, impairments and risk factors. (2009, 7). Taylor & Francis.
    Retrieved from: https://www.tandfonline.com/doi/abs/10.1080/09638280500158422?journalCode=idre20
  5. Dental health of children with cerebral palsy. (2016, October 21). PubMed Central (PMC) National Institutes of Health.
    Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5224428/
  6. Respiratory illness in children with disability: a serious problem? (2016, December 12). PubMed Central (PMC) National Institutes of Health.
    Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5297954/
  7. Prevalence of cerebral palsy, co-occurring autism spectrum disorders,. (2019, February 15). Centers for Disease Control and Prevention.
    Retrieved from: https://www.cdc.gov/ncbddd/cp/features/prevalence.html
  8. Sleep disorders in children with cerebral palsy. (2006, July). Cambridge Core. Cambridge University Press.
    Retrieved from: https://www.cambridge.org/core/journals/developmental-medicine-and-child-neurology/article/sleep-disorders-in-children-with-cerebral-palsy/318BC6B0E43C3DB0E9E1D33BCB332C31
  9. A systematic review of comorbidity between cerebral palsy, autism spectrum disorders and Attention Deficit Hyperactivity Disorder. (2019, January 1). European Journal of Pediatric Neurology.
    Retrieved from: https://www.ejpn-journal.com/article/S1090-3798(18)30153-3/abstract

Source: https://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/

Australian Cerebral Palsy Register announces decline in cerebral palsy across Australia | Cerebral Palsy Alliance Research Foundation

Cerebral palsy rates falling in Australia

Sydney, Australia – 4th December 2018 – Last night at a reception at Admiralty House, hosted by His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd) and Her Excellency Lady Cosgrove the key findings from the 2018 Australian Cerebral Palsy Register (ACPR) were released. 

Among many notable findings, the report has shown the emerging trend of a decline in cerebral palsy (CP) across Australia over the last 10 years from around 1 in 500 children (2.0 per 1000 live births) to 1 in 700 children (1.4 per 1000 live births).

In addition, findings show that the severity of cerebral palsy in children has become milder, with the most recent data showing that amongst children born in the most recently reported birth years, 2 3 children with CP could walk without assistive equipment and more than half of the children living with CP did not have intellectual disability.

These changes in rates and severity can be attributed to the cumulative impact of numerous advances in the health and care of pregnant women and their babies, better management of high risk pregnancies, improvements in the neonatal intensive care, and the implementation of public health initiatives to prevent accidents, all underpinned by Australian and international research.

Professor Nadia Badawi AM, the Macquarie Foundation Chair of Cerebral Palsy said “This report highlights the importance of remaining vigilant in ensuring the best possible care for our pregnant women and babies, particularly those with high risk pregnancies.”

“Amidst this good news, it’s important to note that there were many children with cerebral palsy included in this new data who had very severe disabilities that impact on both their lives and the lives of their families.

Currently in Australia it is estimated that there are more than 37,000 people living with CP and the economic costs of CP have been estimated to be $115,000 per person per annum1.

This, combined with the encouraging results of this latest report show us just how imperative it is that we continue to push forward with advances in this space and investment in research” said Professor Badawi.

The report, with a foreword by Dame Quentin Bryce AD CVO, includes data for more than 8500 children with cerebral palsy, provided to the ACPR by all of the state and territory cerebral palsy registers.

“This fantastic resource could not run without the support of the Cerebral Palsy Alliance and all the generous not for profit groups, health departments and research institutes that fund and house the state and territory cerebral palsy registers.” stated Dame Quentin Bryce

The 4th Australian Cerebral Palsy Register report can be viewed here: https://www.cpregister.com/pubs/PublicationsAndOtherResources.aspx

1 https://cpaustralia.com.au/media/20379/access_economics_report.pdf

About the Australian Cerebral Palsy Register
The Australian Cerebral Palsy Register (ACPR) is an Australia-wide collection of statistics on cerebral palsy from each of the states and territories of Australia.

It was established in 2008 as a research database to facilitate the study of the distribution, frequency and severity of cerebral palsy (CP); the causes and determinants of CP; the effectiveness of prevention strategies and to help plan and evaluate services. The ACPR contains a deidentified copy of data that has been securely uploaded from each of the state and territory CP registers.

The Australian Cerebral Palsy Register is funded and coordinated by the Cerebral Palsy Alliance.

About Cerebral Palsy Alliance Research Foundation
In 2005 Cerebral Palsy Alliance established a Research Foundation to fund Australian and international research in prevention and treatment, and ultimately to find a cure for cerebral palsy – a condition that affects more than 17 million people around the world. The Foundation is committed to improving the quality of life of people with cerebral palsy by funding research into improving early diagnosis tools (which can reduce the long term impact of the disability), treatments (interventions) and technology innovations. https://research.cerebralpalsy.org.au/

Sydney, Australia – 4th December 2018 – Last night at a reception at Admiralty House, hosted by His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd) and Her Excellency Lady Cosgrove the key findings from the 2018 Australian Cerebral Palsy Register (ACPR) were released. 

Among many notable findings, the report has shown the emerging trend of a decline in cerebral palsy (CP) across Australia over the last 10 years from around 1 in 500 children (2.0 per 1000 live births) to 1 in 700 children (1.4 per 1000 live births).

In addition, findings show that the severity of cerebral palsy in children has become milder, with the most recent data showing that amongst children born in the most recently reported birth years, 2 3 children with CP could walk without assistive equipment and more than half of the children living with CP did not have intellectual disability.

These changes in rates and severity can be attributed to the cumulative impact of numerous advances in the health and care of pregnant women and their babies, better management of high risk pregnancies, improvements in the neonatal intensive care, and the implementation of public health initiatives to prevent accidents, all underpinned by Australian and international research.

Professor Nadia Badawi AM, the Macquarie Foundation Chair of Cerebral Palsy said “This report highlights the importance of remaining vigilant in ensuring the best possible care for our pregnant women and babies, particularly those with high risk pregnancies.”

“Amidst this good news, it’s important to note that there were many children with cerebral palsy included in this new data who had very severe disabilities that impact on both their lives and the lives of their families.

Currently in Australia it is estimated that there are more than 37,000 people living with CP and the economic costs of CP have been estimated to be $115,000 per person per annum1.

This, combined with the encouraging results of this latest report show us just how imperative it is that we continue to push forward with advances in this space and investment in research” said Professor Badawi.

The report, with a foreword by Dame Quentin Bryce AD CVO, includes data for more than 8500 children with cerebral palsy, provided to the ACPR by all of the state and territory cerebral palsy registers.

“This fantastic resource could not run without the support of the Cerebral Palsy Alliance and all the generous not for profit groups, health departments and research institutes that fund and house the state and territory cerebral palsy registers.” stated Dame Quentin Bryce

The 4th Australian Cerebral Palsy Register report can be viewed here: https://www.cpregister.com/pubs/PublicationsAndOtherResources.aspx

1 https://cpaustralia.com.au/media/20379/access_economics_report.pdf

About the Australian Cerebral Palsy Register
The Australian Cerebral Palsy Register (ACPR) is an Australia-wide collection of statistics on cerebral palsy from each of the states and territories of Australia.

It was established in 2008 as a research database to facilitate the study of the distribution, frequency and severity of cerebral palsy (CP); the causes and determinants of CP; the effectiveness of prevention strategies and to help plan and evaluate services. The ACPR contains a deidentified copy of data that has been securely uploaded from each of the state and territory CP registers.

The Australian Cerebral Palsy Register is funded and coordinated by the Cerebral Palsy Alliance.

About Cerebral Palsy Alliance Research Foundation
In 2005 Cerebral Palsy Alliance established a Research Foundation to fund Australian and international research in prevention and treatment, and ultimately to find a cure for cerebral palsy – a condition that affects more than 17 million people around the world. The Foundation is committed to improving the quality of life of people with cerebral palsy by funding research into improving early diagnosis tools (which can reduce the long term impact of the disability), treatments (interventions) and technology innovations. https://research.cerebralpalsy.org.au/

Source: https://research.cerebralpalsy.org.au/australian-cerebral-palsy-register-announces-decline-in-cerebral-palsy-across-australia/

Rates of cerebral palsy in Victoria declining

Cerebral palsy rates falling in Australia

Researchers from the Murdoch Children's Research Institute analysed data from the Victorian Cerebral Palsy Register, and found that the decline in rates of cerebral palsy was evident across infants born at all stages of birth gestation, including infants born as early as 27 weeks. Together with the decline in overall cerebral palsy rates, there was also a shift over time to children diagnosed with less severe physical impairment.

Researchers looked at data from individuals born with cerebral palsy born between 1983 and 2009 and found that during that time, nearly 3000 children were diagnosed with the condition. They found that more males (57%) were diagnosed with cerebral palsy than females (43%).

Due to an increase in survival of very premature infants, the rates of cerebral palsy in Victoria rose throughout the 1980s and early 1990s, but the new study has shown that the rates have declined over the latter half of the decade and in to the 2000s. According to study lead author, Dr Sue Reid, this provides evidence of the effectiveness of strategies aimed at protecting the brain from injury and continual innovation in management of premature or sick newborns.

“Therapeutic hypothermia, the deliberate reduction of the core body temperature, is one strategy that has been used more recently for full term newborns with brain injury.

This treatment was trialled in Victoria during the early 2000s and has now become embedded into normal clinical practice throughout Australia,” said Dr Reid, a Senior Research Officer at Murdoch Children's and Manager of the Victorian Cerebral Palsy Register.

“In addition, improvements in resuscitation techniques and provision of neonatal intensive care have contributed to a reduction in the incidence of brain injury leading to cerebral palsy in premature infants.”

Cerebral palsy is the descriptive term for an ongoing problem with body movements or postures as a result of brain maldevelopment or injury occurring before, during or soon after birth.

There is currently no single, universally accepted system for classifying the overall severity of cerebral palsy.

As well as impairments of movement, other impairments that may be associated with cerebral palsy include epilepsy, blindness, deafness and intellectual impairment.

The Victorian Cerebral Palsy Register collects information on people with cerebral palsy, born or living in Victoria since 1970.

The Register was founded in 1987 by Professor Dinah Reddihough of the Murdoch Children's Research Institute and The Royal Children’s Hospital (RCH) in Melbourne and is now one of the largest geographically-defined cerebral palsy registers in the world, holding information on over 5300 individuals.

The Register forms part of a national collaboration of cerebral palsy registers, the Australian Cerebral Palsy Register Group which is hosted by the Cerebral Palsy Alliance in New South Wales.

Source: https://www.mcri.edu.au/news/rates-cerebral-palsy-victoria-declining

Rates of cerebral palsy have decreased by a third

Cerebral palsy rates falling in Australia

Rates of cerebral palsy have decreased by a third

Cerebral palsy describes a group of disorders that affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It is the most common physical disability in childhood. Some people with cerebral palsy also have other problems including epilepsy and/or difficulties with their speech, vision, hearing and intellect.

In Australia there are approximately 37,000 people with cerebral palsy. Worldwide, the incidence of cerebral palsy is 1 in 700 births and there are currently 17 million people in the world who have cerebral palsy.

The Australian Cerebral Palsy Register is a research database that was established in 2008. Information on the database (which does not include names of individual people) is used by cerebral palsy researchers to help identify causes of cerebral palsy, understand the lived experiences of people living with CP and to assess services and prevention strategies.

One of Australia’s first participants on the Australian Cerebral Palsy Register is Hannah Diviney. She has written this guest blog for Miracle Babies Foundation and brings us some amazing, ground-breaking research.

Hi Guys!

I’m Hannah and I’m a 19-year-old Miracle baby (born at 28 weeks) with cerebral palsy (CP). To tell you a little bit about me, I absolutely love writing, listening to music and advocacy work among many other things.

I’m writing this to tell you about some exciting news and things we’ve discovered about cerebral palsy thanks to the incredible work and research of the Australian Cerebral Palsy Register, made up of a team of brilliant scientific minds. They wanted me to be the one to tell you all, because I was one of the Register’s first participants back in the day.

But before I tell you all about that, I wanted to take a step back and actually explain what cerebral palsy is and what it can look to live with it for anyone who might not be familiar.

Cerebral palsy is a life-long disability, caused by damage to or a problem with the developing brain. Over 40 percent of people who end up with cerebral palsy are born prematurely, while others may have suffered strokes after birth, or their brains may have had issues developing all the way back in pregnancy.

Cerebral palsy has the potential to cause a number of issues including impairment to fine and gross motor skills which can include mobility and speech, hearing impairment, intellectual delays, problems with vision and epilepsy to name a few.

No two cases of cerebral palsy look the same and there is currently no way to determine its exact cause for any individual. There is also as of 2019, no known cure.

So now, that I’ve explained a little bit more about what cerebral palsy is and can look , it’s time for the good news!

According to the Australian Cerebral Palsy Register’s latest research and report, over a 10 to 15 year period, the rates of cerebral palsy have decreased by a third! See the cool graph below!

This includes a first-time reduction in the number of full-term babies born or diagnosed in early childhood with cerebral palsy, the group that makes up the largest percentage of people with cerebral palsy.

  It also includes a substantial reduction in cerebral palsy for babies born under 28 weeks of age. To put it in even greater perspective, a baby with cerebral palsy has gone from being born every fifteen hours to now every twenty.

How amazing is all of that?    

It’s so amazing in fact that Sarah and I got the chance to tell Australia all about it on Studio 10 and Nadia was interviewed on Sky News.

This is really exciting landmark research and everyone involved is rightfully incredibly proud. I can tell you as someone living with cerebral palsy, that those figures and the possibilities they suggest for the future bring a huge smile to my face. They greatly reduce the possibility of young kids having to grow up and go through what I and so many others have.

These types of results while not being able to be linked to a distinct ‘why’ are the direct payoff of the work of unsung Australian heroes across our medical and research systems.

They are the men and women on the frontlines making sure that new research is used in practice, that pregnancy, birth and those crucial years of early childhood, where most development occurs, are as healthy as possible.

Without them, I certainly wouldn’t be here and this beautifully resilient community you’ve all built together wouldn’t exist either.

Their incredible work which has led to these results includes more nuanced approaches to treatment of high risk pregnancy, a greater understanding of how to best care for the tiniest and sickest babies in neonatal intensive care, the discovery of ‘cooling’ as a technique to soothe swelling and inflammation in the brain, and a diverse range of public health campaigns promoting healthy pregnancies, child safety and health.

So, you might be asking after all of that, what’s next?

Well, there is much to be hopeful about. Across Australia and New Zealand, studies are currently running to investigate the impact of cooling and this drug called EPO on babies considered at incredibly high risk of developing cerebral palsy.

The possibilities of genome work are also being explored and public health campaigns are occurring to reduce the risk of infections in pregnancy.

  There’s incredibly exciting things on the horizon and I hope that someday I’ll be back in this space, explaining more leaps and bounds we’ve made.

These leaps and bounds or the opportunity for me to write about them would not have been possible if it weren’t for the Australian Cerebral Palsy Register group who work so tirelessly to give us these reports. If you want to see the whole report click HERE.  

All their work and this incredibly important, hopefully globally game-changing research, could not be accomplished without the generosity of donors, organisational support and most importantly all the families throughout Australia who are willing to let the team use our important information.

Sending you all love

Hannah xxx

Hannah Diviney wrote this blog with input from:

Dr Sarah McIntyre

Senior Research Fellow, Cerebral Palsy Alliance, University of Sydney

Prof Nadia Badawi

Medical Director, Grace Centre for Newborn Care, Sydney Children’s Hospital Network

Macquarie Foundation Chair of Cerebral Palsy, Cerebral Palsy Alliance, University of Sydney

Source: https://www.miraclebabies.org.au/blog/archive/rates-of-cerebral-palsy-have-decreased-by-a-third/

Cerebral palsy on the decline in Australia

Cerebral palsy rates falling in Australia

Norman Swan: Amazingly good news about babies and children with cerebral palsy. According to the Australian Cerebral Palsy Register, the rates are falling dramatically. Professor Nadia Badawi is chair of cerebral palsy at the Children's Hospital Westmead, and I spoke to her just before we went to air.

So Nadia, welcome back to the Health Report, it's been a while.

Nadia Badawi: Thank you.

Norman Swan: So tell me what exactly you are announcing tonight, because this is a registry of babies born with cerebral palsy or children diagnosed with cerebral palsy.

Nadia Badawi: That's right. Cerebral palsy is the most common physical disability of childhood, and it affects movement. It's lifelong and it is also sometimes accompanied by intellectual disability, epilepsy, it's a complex condition. And we are very fortunate in Australia to have the Australian Cerebral Palsy Register.

Norman Swan: We should just explain what cerebral palsy is, it's brain damage of some kind from a variety of causes.

Nadia Badawi: Yes, it is, absolutely, it's very complex, there's a variety of causes, and about 40% were born prematurely. We are now aware that about 30% have a genetic basis…

Norman Swan: Meaning it's hereditary?

Nadia Badawi: Look, we think that about 1% to 2% of cerebral palsy is strictly hereditary…

Norman Swan: So it runs in families.

Nadia Badawi: Yes. We think that these are new mutations, and we are seeing those same changes in people with epilepsy and people who have intellectual disability.

Norman Swan: And the minority is due to birth trauma.

Nadia Badawi: Yes. I was very lucky and did my PhD with Fiona Stanley and I also worked with Eve Blair who started Australia's first registry, the Western Australian, and they were among some of the first people in the world to show that despite all our beliefs, most cerebral palsy was not related to a lack of oxygen around the time of birth.

Norman Swan: So what you're presenting is it has flat-lined for many years, the incidence of cerebral palsy, and in the last few years it's dropped.

Nadia Badawi: Yes, it's wonderful.

Norman Swan: It is wonderful. How much has it dropped?

Nadia Badawi: It has dropped by one-third. It is extraordinary.

And at one time we were saying that the rate was as high as one in 400 live births, but when we started the Australian register, which is really the work of all the registers and territories combined, that figure about 10 to 15 years ago was one in 500 live births, and three years ago one in 625. And now we looked at these figures right back forward and it's now one in 700 live births.

Norman Swan: And that's an accurate measure? Because sometimes babies don't get diagnosed with cerebral palsy until they are two, for example.

Nadia Badawi: Yes, and that's why we are not reporting the numbers until the children are five years of age.

Norman Swan: And paediatricians are pretty good about entering the babies in the register?

Nadia Badawi: Allied health professionals, families, people with cerebral palsy can also put in their own data.

Norman Swan: One explanation for the decline is people have got slack and aren't reporting cerebral palsy anymore.

Nadia Badawi: On the contrary, people are actually reporting more because we are getting much more stringent about reporting cerebral palsy, and also I also work in newborn intensive care, and Australian and New Zealand, we're very lucky, the neonatal units get together twice a year, and we are starting to notice in the last few years we are not seeing as much cerebral palsy as we used to.

Norman Swan: What is the reason for the decline?

Nadia Badawi: Look, it's complex. So for the premature babies it is possibly what caused them to be premature. It was factors around the time of their birth and care in newborn intensive care. Everything has got much tighter…

Norman Swan: Are fewer preterm babies being born?

Nadia Badawi: No, they're not, and their survival is increasing. Because people always said, you know, if you have survival increasing you're going to get higher rates of disability, but that's not true. As we've seen increasing survival we've seen dropping cerebral palsy rates. Not only are we seeing dropping rates…

Norman Swan: So the quality of care that has improved survival has improved…?

Nadia Badawi: Yes, so magnesium sulphate, which our colleagues in Adelaide were some of the first to recommend giving to women going into preterm labour. The Cochrane trials have suggested a 30% drop in cerebral palsy among those very premature babies.

Antenatal steroids are now standard of care. The care in our newborn intensive care unit is so much more meticulous. Better resuscitation. I mean, even our transport teams the marvellous NETS team, they go out, they're doing much better and more meticulous resuscitation.

Norman Swan: So when they pick up a preterm baby from a country town, they're getting better care.

Nadia Badawi: Yes. And also there is a proportion of cerebral palsy that occurs after birth, after four weeks of age, up to 2 years.

Norman Swan: So the baby is fine, and then seems to go off for some reason.

Nadia Badawi: Yes…now, some of them aren't fine, so they are babies who need cardiac surgery. That care has got much better. They are being diagnosed during the pregnancy, so they are being born in the right hospitals, near the place where they are going to have surgery.

They are arriving in very stable conditions. I used to remember it was a regular event of a baby with complex congenital heart disease, undiagnosed, arrive in a terrible state, and we either had to perhaps withdrawal intensive care or know that baby would survive with a disability. Almost unheard of now.

Also, all the public health messages are getting through.

Norman Swan: Such as?

Nadia Badawi: Such as fences around pools, car seats, driving more carefully, vaccination to prevent meningitis, and don't shake your baby campaign. So we are seeing a drop in postneonatal, after birth, and that has dropped significantly.

Norman Swan: And what about infection? Because one theory is that infection prenatally, the mother's infection can do that. That's hard to prevent.

Nadia Badawi: Yes, except one of our researchers, Dr Hayley Smithers-Sheedy, she did her PhD and she described that 10% of term babies, so they are babies over 37 weeks, who later are diagnosed with CP, 10% had cytomegalovirus, better known as CMV (not that it's better known to anyone, honestly) was common in term babies with cerebral palsy. There is no vaccine, but we are launching a national campaign with the Department of Health to give some simple guidelines to doctors, obstetricians, midwives, what advice to give to mothers; wash your hands carefully when you change a nappy…

Norman Swan: Oh I see, infection prevention.

Nadia Badawi: Yes, infection prevention. And it will probably prevent other infections too.

Norman Swan: So is this happening uniformly across Australia and across different ethnic groups?

Nadia Badawi: Yes, it's really interesting because at one time we had varying rates of cerebral palsy among the different states and registers, but now we are actually seeing remarkably similar figures.

Norman Swan: And what about Aboriginal kids?

Nadia Badawi: Unfortunately we know there is a higher risk of cerebral palsy among Aboriginal children, and it's higher in the postneonatal group, and not only is it higher, it's actually more severe. So we really have to do work in this area, partnering with communities.

Norman Swan: And is it worldwide, this decline?

Nadia Badawi: There is some decline in Europe. America, there isn't a register. I mean, we are now the largest single country register in the world.

We have registers in the lower and middle income countries in some areas, we are partnering with Vietnam, Sri Lanka, Bangladesh, much higher rates of course of cerebral palsy, and also higher rates of severity because one of the very pleasing things from our report is that the severity of cerebral palsy is dropping.

Norman Swan: So not only is the incidence but when you get it it's not as bad. So it's another example of if you measure it you know what is going on, you can see the effects of your work.

Nadia Badawi: Absolutely Norman.

Norman Swan: Professor Nadia Badawi is the chair of cerebral palsy at the Children's Hospital Westmead.

Source: https://www.abc.net.au/radionational/programs/healthreport/cerebral-palsy-rate-on-the-decline-in-australia/10576428

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