So proud to share with you all that I am a member of the Murdoch Children's Research Institute - MCRI national working group run by the Centre of Research Excellence in Newborn Medicine who over the next 12 months will research, discuss, draft and launch the National Guidelines for Health & Development Follow-Up for Children Born Very Preterm (32 weeks or earlier).
In a nutshell these will be the guidelines that doctors and early childhood professionals nationwide use as the guide for developmental follow up appointments for very premature babies who are those born earlier than 32 weeks like Ashton was. These guidelines will run from birth to 5 years of age to cover the crucial early childhood years. These early years are critical in development and right now with no guidelines available many children's diagnoses are being missed or they're diagnosed too late for intervention to have any effect as it has to take place in early childhood.
As many of you know I had to advocate fiercely for Ashton to be seen for developmental follow-ups and if I had not done that and had followed directions given to me he would still be on a waiting list right now and he would've missed the last 4 years of intensive speech, OT, psych, ASD and other therapies that have changed his life and shaped his future. It is such an honour to have been invited to join this group and it’s my privilege to be the voice of and advocate for countless families with "very premature" babies nationwide who will walk along the same path we did. I haven't read this much since my Law School days and today had to present to the entire group (DAUNTING!!!) during our 2 hour long zoom meeting, but I could not be prouder to be a part of this group who will hopefully have an effective impact on the long-term outcomes for very preterm babies for many generations to come...
The group is made up of over 30 members from all over Australia and a NZ member too and includes Neonatologists, Paediatricians, Allied Health workers, Maternal Child Health Nurses, GPs, remote/regional Doctors, researchers, myself and two other consumer members ie parents of very premature babies.
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