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.

SurPre Model of Care

The SurPre Model of Care is open for public consultation. This is a body of work designing a new follow up program for children aged 2-4 born very preterm. We have worked as part of the Steering Committee and Working Groups on this project. Have your say here:

https://www.crenewbornmedicine.org.au/our-news/news/2024/notice-for-public-consultation-the-surpre-model-of-care/

Public consultation closes 17/12.

MCRI Research Connection

It was so lovely to be invited to the Murdoch Children's Research Institute (MCRI) Preterm Research Connection to participate on the parent panel.  The researchers in attendance all have a strong commitment to embedding the Lived Experience into their work.

It was fascinating to hear about the differences observed in adults who were born preterm and also hugely reassuring to hear of the similarities to their term born peers.  The preterm born adults who shared their personal insights were remarkable and left many audience members with goosebumps.

Some researchers presented on the gaps within the system that continue to persist and highlighted why continued research and innovation is so important.  We've been collaborating on several projects including the Guideline for Growth, Health and Development Follow-up for Children Born Very Preterm, which has now been published and endorsed by National Health and Medical Research Council and another relating to a Model of Care for follow-up.  These pieces of work are great places to start, but they are not end points and require expansion, implementation, consideration of health equity across the Nation and more.

We look forward to continuing our relationship and working to solve some of these pressing issues.

Research on Exercise Interventions

People born preterm may exercise less, and at a lower intensity, than their term-born peers. They are also at risk of developing lung problems in later life. Exercise training can improve fitness and reduce symptoms caused by lung problems.

We are seeking adolescents and young adults (ages 12 to 35 years) who were born preterm, and parents of children (all ages) born preterm, to complete a brief (5 minute) online survey to understand the perceived need for an exercise training intervention for young people born preterm (Project ID: #45103).

The survey is anonymous and responses confidential. We are interested in all opinions, whether you (or your child) exercise a lot, a little or not at all! 

You can complete the brief survey by clicking on the following link:
https://monash.az1.qualtrics.com/jfe/form/SV_7a1SsytE0491uAK