Fantastic resources for families

We’ve been working with our friends at The Kids to bring these fantastic resources to life. Designed to put critical information about lung health into the hands of parents of children born prematurely, or adults who were born preterm themselves. There are two great fact sheets along with a helpful worksheet to note down important information you can take along to any appointments with health care professionals. Resources are free and available to check out on The Kids website.

STAMP RSV Study

Researchers from The Kids Research Institute Australia are hoping to learn more about how respiratory syncytial virus, or RSV, affects your family.

They are wanting to speak with parents/carers of young children at a higher risk for RSV infections. Researchers will ask how RSV affects your family, and what information is important to you when learning about RSV immunisations.

Researchers would love to hear from you if you have a child aged under 2 years who:

·                     was born very pre-term (32 weeks or earlier), and/or

·                     has a heart or lung condition, and/or

·                     has a chromosomal abnormality

How do I get involved?

If you’re keen to get involved, please click on the following link for more information, and to sign up to the study: https://redcap.link/iwyyb1dw

Baby Moves VIEW - Co-design Project

The University of Melbourne Department of Physiotherapy is recruiting participants to co-design the Baby Moves VIEW (Video Evaluation Web) system.  

Babies who are born sick often have their movements checked to screen for movement problems, including cerebral palsy.  Baby Moves VIEW is an app for parents to record and safely send videos of their baby’s movements to health professionals for assessment.  

The team is looking for parents of babies/toddlers aged 3 years or younger. You may have had a baby who needed care in a NICU recently, or had movement screening using the General Movements Assessment, or have a child with cerebral palsy. Parents are also welcome to apply if their baby has been medically well as we want parents with a variety of experience.  

They are also looking for health professionals who work with babies/toddlers aged 0-3 years old and know about the General Movements Assessment.  

Participants will collaboratively design aspects of the Baby Moves VIEW system over six 90- minute workshops and be reimbursed for their time. It will be a small group of eight parents and health professionals, so not all who express interest will be selected to participate.  

Participants will be reimbursed for their time.  

For more information, and to express your interest, visit https://go.unimelb.edu.au/z7ip  or email Amanda (amanda.kwong@unimelb.edu.au)

Expressions of interest close on the 2nd of May 2025

Not just the tiny ones

Recently published work from the Murdoch Children's Research Institute (MCRI) reveals that children born at later gestations, 32-36 weeks gestation, have differences in their academic performance and behaviour when compared to children born at term.  You can find and read the paper here:

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2826283

Whilst we continue to work with the Preterm Birth Prevention Alliance on safely reducing rates of preterm and early term birth across Australia this work doesn't take away from the fact that each year tens of thousands of Australian children are born early or sick.  The majority of them falling into the 'mid to late preterm' category.

Most Follow-up Programs that exist continue to focus on the sickest and tiniest babies often leaving a big gap!  Whilst we continue to work with others to drive change in this area, it does take time.  The families living the experience today need help, support and guidance.  Here is what you can do:

  • Tell your healthcare professionals your child was born early or sick and ask them to consider that when making a diagnosis or treatment plan.

  • Join our Nurturing NICU Families program to help support early development and wellbeing, it's free! Info here: https://www.tinysparkswa.org.au/nurturing-regional-nicu-families

  • If you have access to follow up, go to the appointments prepared with questions.

  • If you are concerned organise a check in…

    - You can self refer to go on a public waitlist for speech, OT, physio, etc.

    - Wait lists can be long, better to get your name on a list and decide not to go when a spot opens up, than wait to put your name down.

    - Don't feel like you are being listened to, you know your child best, get another opinion.

    - You don't need a diagnosis to access services.

    - Private options are available.

    - Not sure who to see, what to say or where to go? Connect with us for peer support and we can help with general advice.

  • Consider research opportunities.

We are working hard with others who are passionate and dedicated to drive change and create new opportunities, watch this space for more to come on that in 2025.