All About Prems – Where did we come from?

Dear families and supporters of our perfect, precious premmies,

Over the past 20 months I have been fortunate to have the opportunity to work in the support of our premmie community, firstly through L’il Aussie Prems Foundation Inc and now as a founding member of All About Prems.

Many of you will know that we retained and transitioned only the online support group component from L’il Aussie Prems Foundation Inc.  What you may not know is the process and decision making behind the change and why we opted to retain an online support group despite the presence of highly successful charity organisations that support families of premature babies.

Outside of what was formally announced as the reasoning, one of the major catalysts of the decision is detailed below.  Enjoy the read and please leave some feedback.  We’d love to hear your thoughts and especially your experience with or without support.

Warm regards

Sonya Georgievski Comninos

Co Founder and mum to my precious twin ex 27weekers

 

Despite more awareness and a greater profile prematurity and the challenges it represents for families continue to be misunderstood.  This ultimately means the level and type of support currently available for families touched by premature birth is in many respects inadequate.

The common assumption about prematurity include the following:

• Prematurity is finite, it starts at the birth of baby and ends when baby is discharged from hospital.
• Premmie babies ultimately catch up to full term babies
• And following on from the previous point, everyone knows someone who had an earlier premmie than you and they are doing fine
• Baby weight is a significant and key indicator of the overall wellbeing of baby
• Developmental milestones run pretty much on schedule with the corrected age of baby (adjusted for weeks born early)
• It is preferable to give all babies born too soon a chance at life
• Financial support is readily available for families that need it, before, during and after the birth of a premature baby
• Early intervention programs are readily available and are proactively accessed as an extension of baby’s hospital care when they are outpatients
• Emotional support is available for families and their babies throughout the journey

The reality is for at least the first twelve months of baby’s life at home, parents will obsess about germs and sick people. They will find comfort in putting up lists and rules.  They will learn, think and use medical terms and they will seek out as much information as they can to try and understand what should be happening next.

Many babies and particularly those born at less than 28 weeks gestation will require additional support after discharge. For some this support will be a lifelong requirement.

Through a lack of understanding, this normally joyous, celebrated and momentous life event often become isolating and in too many cases debilitating.

The statistics are as below:

• Every year in Australia over 27000 babies will be born too soon (less than 37 weeks gestation)
• 8% or just over 2100 of these babies will spend time in Neo Natal Intensive Care
• Studies estimate that up to 70% of mothers of babies who spent time in NICU will be diagnosed with mental health illness
• More than 40% of NICU mums suffer from Post Natal Depression compared with 5-10% of mothers whose babies were born at term
• Mothers (as the primary carer), report feeling isolated and unable to connect with the experience of other families

Support groups such as ourselves aim to connect families and normalise the premmie experience so that the feelings of isolation do not prevail. Over the past decade we along with other charitable organisations have improved the emotional experience for families whose baby must spend time in hospital care.  But there is still much to do.

One of the challenges we presently face is a by-product of the proliferation of social media.  Ten years ago connecting people online required time and effort. Connectivity was a lot slower and the overall online experience a lot more painful.  These days we are more ‘connected’ but at the same time research in the area shows us that feelings of disconnection are becoming more prevalent.

The danger of this phenomenon is that it may serve to dilute the benefit associated with online support.  The challenge for those of us providing support today is more than just a question of access, it is to make it meaningful and engaging.

Add to this an increasingly competitive environment that has seen the entry of ‘profit organisations’ who have recognised the commercial opportunity and the question of where to from here becomes an interesting one.

Whatever the answer of how, our purpose is clear.

Our aim is to be the go to online support group for families of babies born too soon with a view to ensure that all families of premature babies are emotionally supported.  We aim to raise awareness and support families on their premmie journey, from bedrest, to birth and beyond.