Brent and Jacquelyn Neufeld had no inkling their newborn son was in for such a challenging start to life.
Nash, their second child, came into the world last spring following a routine pregnancy and delivery.
But between hospital visits, medical tests and unanswered questions about Nash’s health, the past several months have been anything but routine for the Flin Flon couple.
“We don’t know what his life expectancy is going to be or what his quality of life is going to be,” says Jacquelyn. “Right now we are hoping that he’s able to walk and we’re hopeful that he’s able to talk, but at this exact moment we don’t know what his quality of life will be.”
Nash was born on May 17, 2015. Four months later, he nearly died.
“We had always questioned that there was something with Nash, that he wasn’t feeding properly, but then we realized at that point that he was slowly failing,” says Jacquelyn.
“When we got him to Saskatoon on Sept. 23, he could no longer lift his arms up, or he was sleeping 21 out of 24 hours a day.”
It turned out that Nash, then and still very small for his age, had difficulty swallowing liquids, including his mother’s breast milk.
He had consumed enough milk to survive, but when he hit his four-month growth spurt, his tiny body could no longer manage on so little fuel.
Nash now receives nourishment through a feeding tube in his nose, though he’s scheduled to undergo surgery in May so that the tube can go directly into his stomach.
The surgery will also see doctors take a muscle biopsy, as Nash has low muscle tone and does not hold up his own weight when lowered onto a table or floor.
Jacquelyn says Nash will also be diagnosed with a yet-to-be-determined physical disability, the implications of which are unclear.
Additional testing is ahead, meaning the family’s typical travel schedule – monthly trips to Saskatoon for medical care – is likely to continue.
Jacquelyn doesn’t sugarcoat the reality of a situation that would overwhelm any family.
“Terrible. It’s been awful,” she says when asked how the family is processing the circumstances.
If there can be one silver lining, it is the community support for the Neufelds.
Jacquelyn says the family is grateful for meals people have cooked and the anonymous donations – not sought out but much appreciated – that have come through.
The family’s story struck a chord with the leadership of IAM Local 1848, the trade union to which Brent, a pipefitter apprentice at Hudbay, belongs.
IAM this week donated $2,000 to the Neufelds to help purchase a feeding pump and related items, and cover expenses related to Nash’s ongoing care in Saskatoon.
IAM president Rene Beauchamp issued a challenge to other organizations and individuals to also lend a hand to the family.
“They’ve been thrown a huge curveball in life and I think as a community we should step up and help out this family,” he says.
Quick to take up Beauchamp’s challenge was Dennis Hamilton, coach of the Party Piranhas, a local slo-pitch team.
Hamilton, who is also an IAM member, says the team will be holding a meat draw for the family, with the date to be determined.
Anyone wishing to make a donation to the Neufelds may visit the RBC Royal Bank Flin Flon branch, where a fund for Nash has been established. Donations will be put toward the expenses associated with the infant’s care.
