Strong Voices

Shelby is the youngest of the five Porowini kids and his arrival upended their family life. But being told he was beautiful made all the difference.

Stephanie Porowini and her husband Mark were living on the Gold Coast in Australia with their four children. She was selling real estate when she became pregnant with Shelby and they headed for home in Whāngārei. That was in 2016.

“He was unexpected, but he is a blessing and he is amazing,” Stephanie says. “We found out he had Down syndrome when he was first born. We knew he had a heart condition, but we did not know anything else.” Shelby was also born with a cleft palate and he has trouble with choking and keeping food down. A scan showed he had two holes in his heart – he has surgery scheduled at Starship Hospital in February for a repair.

“I had severe post-natal depression after he was born. I didn’t bond with him straight away. There were all these little complications that he had. It just became really overwhelming,” she says. “There was a lot to deal with, with my other four kids.”

Stephanie says she didn’t feel supported by health and disability professionals.

But when Shelby was three months old the family were assigned an outreach nurse who changed that. “She said, ‘Your child is beautiful’. She just clicked with us straightaway. Ever since then we just never looked back.”

Stephanie is now helping to make sure other families have a better experience. She is one of a group of mothers who meet in Whāngārei each month to offer each other support over coffee. “Sometimes we get mums who come along and tell their stories and sometimes they cry,” she says.

More recently they have been meeting representatives of the Child Health Centre at Whāngārei Hospital to identify gaps and ways to improve services to families, who experience long waits for assessment and treatment and poor communication.

The mums’ group was initiated by IHC Family Liaison Jim Callaghan to identify the needs of families. “All the stories were different and the pathway for all of them had been completely different,” he says. “The consistent thing was the lack of consistency.”

After an initial meeting late last year with a multi-disciplinary team from the Northland District Health Board’s Child Health Centre, a follow-up meeting was held with the community nursing team. “Other health professionals will follow. It’s taken on a life of its own,” Jim says.

He says it’s important that outreach nurses are the right fit and parents aren’t overwhelmed with offers of services all at the beginning, but at different times as needed. “I am really happy that the families are being heard.”

Martina Ackermann, Quality Facilitator at the Child Health Centre, says the initial meeting was to get a parents’/patients’ perspective. “The feeling of not being listened to seems to be a common theme, also having to repeat themselves – every different health professional they come into contact with is asking them the same questions,” she says. “The aim of this is to have a consistent approach for all children who come through our service so everybody gets the same offering, the same support and the same information about where they can go to get support.”

Caption: Shelby Porowini is going from strength to strength.