A friend was recently having a coffee in our kitchen and remarked, “there was a 24-weeker born today”. The friend was referring to an infant being born in our local rural hospital at 24 weeks gestation, four months early. It got me thinking about the unexpected journey that family was about to embark on. I have witnessed this journey many times as a privileged outsider; initially as a paediatric physiotherapist and more recently as part of my PhD research.
Parents often talk about their ‘parenting journey’. Becoming a parent and raising a child is certainly a life-changing adventure. I have four kids, all born full-term, and have experienced the joy of counting ten fingers and toes, handing the new-born around to ecstatic relatives, and those intimate quiet moments of holding, rocking and feeding my new son or daughter.
Yet, parenting a premature infant is usually a traumatic event, filled with dire uncertainty and utter disruption of the parenting dream. Additionally, for families living in rural areas of Australia this experience comes with a plethora of rural-specific barriers and stressors. This led me to interview parents of premature infants from rural areas to give voice to their stories and their needs.
According to the World Health Organization, being born prematurely is the leading cause of disability in children world-wide. Rural communities in Australia experience much higher rates of premature birth compared to metropolitan areas. The rate among Aboriginal and Torres Strait Islander people in rural Australia is nearly double that of non-Indigenous people. Premature infants usually require highly specialised care - initially to survive, and later to manage the chronic health issues they often experience and to ensure they achieve their developmental potential. Yet, these specialised services are located in metropolitan centres, rendering them difficult and sometimes impossible to access for rural families.
Parenting a premature infant in a rural area quickly becomes about therapy, medical equipment, assessments and travel, rather than cuddles and bonding. As one mother who was also a nurse sighed:
“It was just like this shift that never ended, that you always had to [keep] watch and you were so overtired …. [but] this was your life now”
This parenting journey is not the one that was anticipated. The parents did not expect an infant so small, complex and fragile. So fragile in fact that every family I have interviewed to date has told of an instance when their infant’s health deteriorated quickly and critically. One mother explained tearily:
“I left [my son] home with my husband.… I get a phone call at 12 o’clock… [my husband] says, “I’ve got the ambulance here,” and I said, “What do you mean you’ve got the ambulance there?” He said, “[our son has] stopped breathing… he’s not breathing”.
The trauma was ongoing, and these crises usually occurred when the family was in their rural home-town, away from the specialised health services they had come to trust and rely on.
It was clear from the research that these family are traumatised and need support.
Health professionals are in an ideal position to provide this support. Generalist rural services need to strive to understand the particular needs of premature infants and their families, while those providing specialist services in metropolitan areas need to do more to understand the rural-specific issues faced by families from the country.
While participants in this research spoke of trauma, they were also proud to survive the trauma. As one mother exclaimed:
“He’s beautiful, he’s happy, he might have a lot of health issues, but he’s a happy little boy and he’s very much loved…. I’m kind of proud of myself… it’s not an easy thing to go through with little to no support from anyone.”
My heart goes out to the parents of the 24-weeker my friend mentioned in the kitchen. They will need to be supported through what will be a long and difficult period of their parenting journey. I just hope that those around them can empathise with their needs as a rural family in order to provide this support.
Luke Wakely presented a paper on Growing together: experience of parenting a premature infant in a rural area at the 15th National Rural Health Conference, Hobart 24-27 March 2019.