I am a Mum to two daughters who were both born prematurely and an ex-parent of the program.
On 16 April 2013, my daughter Matilda Jane was born at 28 weeks, 3 months earlier than she was meant to come into this world. She was just 929g, dropping quickly down to just 803g.
She. Was. Tiny.
It was certainly not how we had planned to welcome our little girl into the world, this teeny being surrounded by wires and machines, not being able to hold her or kiss her or even see her face. We sat for hours beside her while she lay in her isolette, willing her just to keep breathing.
Now being an accountant, I normally like numbers, and in fact my husband fondly refers to me as a number nerd, but watching those screens all day that tracked all of her vital signs, well I didn’t like those numbers. Numbers that if they dropped too low would set off alarms, the sounds of which no parent of a prem baby will ever forget.
Eventually, she was settled enough that we were able to do some simple things like change her nappy and feed her, albeit through a tube. And then, when she was just shy of a week old, she was finally stable enough that we were allowed to take her out of the isolette and cuddle her for the first time. That was a great day.
As a parent of a premature baby in hospital, you celebrate every small milestone: every gram, every breath, every ml of milk. And you focus so hard on getting your baby home from hospital that you don’t realise the hardest bit is yet to come.
The worry. Will your child be ok? Will they have any developmental delays? How will you know if they are behind? Who do you turn to if they are? You’ve had medical teams monitoring your child 24/7 for weeks, maybe months, and then suddenly you are home. Alone. With worrying statistics continuing to swim around in your head. It is isolating and terrifying all at once.
5 years of anecdotal evidence working with these families has consistently highlighted that parents feel even more isolated and worried about their child’s ongoing development once they return home due to limited ongoing knowledge and/or support. And I can tell you, Dr Google doesn’t help!
This is why, parents of children born preterm are 3 times more likely to suffer anxiety and depression. This is before the added stress and isolation issues associated with having a child with a disability. Poor outcomes impact many preterm children, not just those with a pending or confirmed disability diagnosis.
ReadyStepGrow strives to change these outcomes by providing an early intervention program that supports preterm children in their development as well as empowering their parents by bridging that knowledge and support gap. We do all of this with the aim to help them reach their full potential in preparation for starting school. So these issues are not discovered later on down the track, when these kids are older and it’s harder to intervene.
And in closing I thought some of you might be wondering what happened to that tiny little lady Matilda?
Well, she’s now a crazy, funny, vivacious 5 year old who, thanks to the amazing support of ReadyStepGrow, is nearly ready to start primary school next year.
We are 1 of the 250+ families that ReadyStepGrow has supported over the last 5 years. We certainly love this organisation, like so many of the other families ReadyStepGrow has helped!