TRANSCRIPT
It has been eight years since Emma Byers had her twins.
They were born very preterm which means before 32 weeks gestation.
She says the experience came with a lot of postpartum anxieties and pressures.
“It was very sudden, and it was quite a shock. I didn't see my boys until the following day. When I arrived, I was really overwhelmed by the medical intervention that my boys needed to help them in these very, very early stages of their life. And both of them needed really significant help and intervention with their breathing. That was the main concern for them because they were born so early and spontaneously so there was no ability to get any interventions and steroids to help their lungs. They both had a lot of trouble and had to learn, I suppose, how to breathe"
This is the case for many Australian preterm families with over 3,500 babies born very prematurely in Australia each year.
Approximately 60 per cent experience difficulties and are at higher risk of growth, health, and developmental problems than full-term babies.
Although not all babies will encounter these issues, many parents are concerned about the long-term health outcomes for their children.
A team lead by Murdoch Children’s Research Institute [[MCRI]] has developed the first national guidelines to improve the long-term health outcomes of these infants.
Professor Jeanie Cheong is the Group Leader for the Victorian Infant Brain Studies at the M-C-R-I.
"The purpose of the guidelines is to provide a framework, an evidence based framework, to guide health professionals and also to inform families themselves about what areas of health and development are important. And also at what ages ideally, the children should be seen. And it is very important that you know, any problems with growth or health or development is detected early in childhood. So that resources and interventions can be put in place to help the children improve their outcomes. And optimise you know their potential. "
The National Health and Medical Research Council of Australia has adopted the guidelines - covering children from the moment they leave the hospital until they reach six years of age.
The guidelines will address care gaps by directing every family with a very preterm infant to a coordinated, multidisciplinary team to ensure health risks are detected and treated early.
Sarah Kirby, who had her son Teddy at 26 weeks, says he weighed 719 grams and could almost fit in her hand.
Ms Kirby, whose son is now a healthy 14-month-old, believes the process of having a preterm baby can be overwhelming, and the establishment of national guidelines is a relief.
"It’s a lot, and I'm just so glad that there’s going to be a standard guideline that are going to be in place now so that all the parents after us can just have like, even just walk out of the hospital feeling like they've got something to support them. Because you do spend a lot of time in NICU [[Neonatal Intensive Care U nit]]. So to have someone there to say, Okay, this is the check-ups that we're going to do, when we're going to be able to find out you know, what's going on, what's your baby if there's anything wrong fairly quickly, because this is standard across the board. You can't get much further than that can ya? Like I know that it'll keep getting better but at the moment, to have that is just incredible."
Ms Byers says structured support is important also for the mental health of families of very preterm babies.
“Everybody was very well aware that I needed to support as much as the boys did. I felt like the emotional help and support that I got was amazing, but then when I came home, there just sort of seemed to be a disconnect with the mental health services to help me process everything that was going on. I think it would have been great to have been linked in with those prior to the boys being discharged from hospital. But once I did, I really did find that the supports were there. It just took a little bit of a disconnect to get to that."
Professor Cheong says services vary considerably across Australia.
She says follow-up care needs to be tailored to each child and initiated by each hospital’s Neonatal Intensive Care Unit [[NICU]] team.
Professor Cheong says the guidelines will significantly improve survival rates for babies.
"Children who are born very preterm do have follow up after they leave the hospital intensive care. However, this is not uniform throughout the country. And depending on where you live and the availability of resources, there is a great disparity of follow up. So these guidelines once again provide best practice recommendations. So that health services and families can advocate for the best care possible within the resources that we have."
The guidelines will be reviewed in five years and updated with any additional evidence-based recommendations.
Professor John Newnham, chair of the Australian Preterm Birth Prevention Alliance says the body is working on safely lowering the rate of early birth across Australia.
"Improving the care for babies born very preterm is very important. But we in Australia now have a program running to prevent preterm birth in the first place and the signs are that it's being effective."
