Updated: Jan 5, 2019
In 2018 our major beneficiary is the volunteer run Tiny Sparks WA. From the shock, stress and heartache of having a premature baby, a group of Perth parents set out to create a peer led community that would fill a gap in the existing provision of care offered to families. Informed by personal experiences an organisation that is dedicated to being there for others has grown, and as a result the difficult journeys through high-risk pregnancy and premature birth have been made that tiny bit easier.
Amber Bates (pictured below), one of the founding members of Tiny Sparks, shares the story of this compassionate and inspiring community organisation.
How did Tiny Sparks WA start?
In 2010 our son Adison was born at 25 weeks weighing 865g. During our almost 4 month stay in Perth we met other families in the neonatal unit. After we took our babies home we stayed in touch. We all had different stories but a common goal to change things for others. There were no organisations supporting families through high-risk pregnancy and it was difficult to connect with other parents of premature or sick babies.
It was then that we put our heads together and Tiny Sparks WA was formed. We all learnt new things, how to build a website, regulation requirements, running a volunteer based not-for-profit isn’t easy and it was a steep learning curve for all of us.
Our Incorporation was approved in November 2013 and we launched to the public early in the new year of 2014. Since then we have grown and grown!
What’s the most important thing for people to learn about TSWA?
As a 100% volunteer run, not-for-profit organisation our Mission is to improve the health and wellbeing of Western Australian families enduring high-risk pregnancy, infants requiring neonatal unit care and the associated childhood impacts; including the communities supporting them.
From the moment of diagnosis of high-risk pregnancy or the shock of your babies admission to the neonatal unit Tiny Sparks WA is there.
Brett and Lee-Ann Fowler with baby James
Tell us about your plans to grow TSWA.
With 4,000 new babies admitted to neonatal units in Western Australia each year and approximately one third of all pregnancies in WA experiencing complications requiring treatment, there is a need for us to grow our programs and services.
We have some incredible goals and plans for the future including, providing Care Packages for all babies admitted to neonatal units in WA; being able to offer developmental playgroup placements for all families wanting to participate; and a family resource centre that we can use for Developmental Playgroup, other face to face meet ups, storage and packing of care packages along with hiring out to derive income for a sustainable future. Along with raising awareness and providing education, we aim for a sustainable growth to ensure continuity in our programs and services for years to come.
TSWA relies on volunteers, tell us how important they are to you and the sorts of roles they undertake.
Without volunteers Tiny Sparks WA would cease to exist. We have no paid staff, everyone at Tiny Sparks is a volunteer!
Our volunteers are a fabulous group of people, most of whom have experienced high-risk pregnancy or the neonatal unit first hand. They are all driven to give back and make a difference for others.
Volunteers undertake tasks such as strategic planning, fundraising, collecting mail, sorting knitting & sewing donations, packing and delivering care packages, running our social media, peer support, event organisation and more!
We want to maximise our impact with the donation dollars that we receive and being volunteer run ensures we can do that.
Tell us about the specialist Developmental Playgroup that you’ve established, and the importance of this service.
Sadly for many the neonatal unit journey doesn’t end when they are discharged from hospital. In fact that is just the end of chapter 1.
Through our own personal experiences and seeking feedback from our community we established that there was great concern from families about:
Neonatal unit graduates reaching developmental milestones in good time compared to their same aged peers
Access to health professionals (speech therapist, occupational therapist, physiotherapist) who had experience with neonatal unit graduates, especially micro-prems
Exposure to sickness for their medically fragile child when attending community based programs
The need to connect with others who had been through a similar journey
Staying mentally healthy we considering the stress related to all of the above
Tiny Sparks WA sort to remove these barriers and by heavily subsiding this program all families are able to access it.
Justin Martin with his twin girls Hanna and Riley
Army Art’s theme for the 2018 Exhibition is Transition. What are the specific challenges faced by your families as they transition from expectant parents to families with Tiny Sparks?
It is only natural when you are expecting to hear some horror stories about pregnancy and birth! Most people think ‘that will never happen to me’. The shock and overwhelm of being thrust into this new medically complex world is traumatic!
This new world is fast paced, things can change in an instant and for many it is literally life and death at every moment. For most it is something they have absolutely no first hand knowledge about and they are totally lost, overwhelmed, isolated.
They grieve the pregnancy and birth experience they were expecting. Many crave knowledge and connection with others.
Post Natal Depression and Post Traumatic Stress Disorder are very real challenges for families whilst they navigate this new path they are now walking.
The neonatal unit is also a kind of limbo land. No one is entirely sure what the outcome will be in the longer term. Will the baby survive? Will there be long lasting effects? These are the questions no one can answers. Birth should be an almost instantaneous transition to parenthood and bonding with your newborn, but the neonatal unit prolongs this transition. You must seek permission for every small thing you would usually take for granted as a new parent. This transition is one of the toughest challenges you will ever face.
We look forward to seeing you at the exhibition opening night on August 24th in support of Tiny Sparks.