New guidelines to improve long-term care of preterm babies
Australian guidelines have been created to improve the long-term health outcomes of children born very preterm.
The clinical practice guidelines, the first of its kind in the country, focus on the follow-up care of babies born before 32 weeks’ gestation from the time they leave hospital up until six years of age.
The guidelines have been led by Murdoch Children’s Research Institute (MCRI)’s Centre of Research Excellence in Newborn Medicine and developed alongside a team of neonatologists, pediatricians, clinicians, maternal and child health nurses and those with lived experiences of preterm birth from across Australia.
MCRI Professor Jeanie Cheong said the guidelines recommended structured and specific post-discharge care for very preterm babies who were at an increased risk of growth, health and developmental problems.
Image: Professor Jeanie Cheong
About 3,500 babies or 1.1 per cent are born very preterm in Australia every year. Of which about 60 per cent will experience difficulties.
“Children born very preterm require intensive medical care to survive,” Professor Cheong said. Treatment for these children has advanced over time and survival rates have significantly improved. But due to their early birth they face potential health setbacks including delayed growth, elevated blood pressure, hearing loss, neurodevelopmental and sleep problems, language delay and autism.
“Some difficulties present early in life and others during the preschool years. Very preterm birth is distressing for caregivers and families and along with the additional carer burden, can have consequences for family wellbeing, mental health and quality of life.”
Professor Cheong said follow-up services for children born very preterm varied considerably across Australia.
“A lack of consistency in follow-up care at hospitals and other medical and community services has led to many children missing out on important assessments for identifying health issues and access to timely referrals,” she said. It’s critically important that difficulties are identified early to ensure children receive appropriate, early intervention.”
MCRI’s Dr Jamie Owen said to avoid these gaps in care, every family with a child born very preterm should be guided by a co-ordinated, multidisciplinary team.
Image: Dr Jamie Owen
“These Australian first guidelines detail how GP clinics, hospitals and other healthcare centres can work together to ensure all children have access to transformative, ongoing care and any health concerns are identified and treated early,” she said.
“Follow-up care, needs to be tailored to each child and initiated by each hospital’s Neonatal Intensive Care Unit (NICU) team. Post-discharge care may involve many healthcare professionals and services, making co-ordination between these teams essential to maximise efficiency, reduce duplication and lessen the burden on families.”
Born at 26 weeks’ gestation, Teddy weighed just 719 grams and almost fit in his mother’s hand.
Mum Sarah Kirby said when Teddy’s heart rate started to slow while still in utero, doctors had to perform an emergency caesarean. Teddy received care in the NICU for almost 100 days.
Image: Teddy, now 14 months, is doing well and only requires physiotherapy support.
Read more about Teddy’s experience in hospital and how he is faring today.
The guidelines, approved by the National Health and Medical Research Council (NHMRC), will be reviewed in five years’ time and updated with any additional evidence-based recommendations.
Professor Cheong said further funding would also help extend follow-up care for those born preterm throughout their schooling years and into adulthood.
Read more on the preterm birth follow-up care guidelines.
*The content of this communication is the sole responsibility of Murdoch Children’s Research Institute (MCRI) and does not reflect the views of the NHMRC.
Available for interview:
Professor Jeanie Cheong, MCRI Group Leader, Victorian Infant Brain Studies
Professor Rod Hunt, Monash Health’s Newborn Intensive Care Unit
Sarah Kirby whose son Teddy, 14 months, was born very preterm
Emma Byers whose twins Chester and Eli, 8, were born very preterm
Media Contact:
Murdoch Children's Research Institute
Phone: +61 457 365 848
Email: [email protected]
About Murdoch Children’s Research Institute
Murdoch Children's Research Institute is the largest child health research institute in Australia committed to making discoveries and developing treatments to improve child and adolescent health in Australia and around the world. They are pioneering new treatments, trialling better vaccines and improving ways of diagnosing and helping sick babies, children and adolescents. It is one of the only research institutes in Australia to offer genetic testing to find answers for families of children with previously undiagnosed conditions.
Funding
The project received funding from the National Health & Medical Research Council through a Centre of Research Excellence Grant (#1153176) to the Centre of Research Excellence in Newborn Medicine.