'Not something to be played around with': Manitoba family struggles after son diagnosed with rare urinary condition
A Manitoba mom wants other parents to know about a rare urinary tract condition her son was born with that she had never heard of.
Today Ashley Luby’s fourteen-month old son, Fox Chia, is active and doing well but as a newborn he had back-to-back urinary tract infections.
Luby said it was during a second hospital week-long stay when more tests found something was wrong.
"We also determined that he had a distended bladder. So his bladder was thickened which was an indication that his output wasn't happening very easily at all," she said.
This was when she first heard the term "PUV," short for posterior urethral valves.
The condition causes boys to be born with an extra flap of tissue in their urethra, which can stop urination or make it hard to urinate.
"I really want parents to know that this condition exists because it will have life-long consequences if it is not diagnosed in your child," said Luby.
Many PUV cases are found on prenatal ultrasounds, but Fox's case wasn't found until after birth.
Shared Health said the severity of the condition depends on the damage done to the bladder or kidneys, adding some PUV cases are mild with no long-term issues.
“Others never have normal bladder function and may require a kidney transplant when older. These children are followed by both pediatric urology and pediatric nephrology,” read part of a statement by a Shared Health spokesperson.
It said 1 to 3 PUV surgeries are performed each year in Manitoba and most cases are done within six weeks.
Luby told CTV News there is permanent damage to Fox’s bladder and he will likely need specialized care for the rest of his life.
"It's not something to be played around with," she said.
Fox had corrective surgery and was on preventative antibiotics until recently.
"If you have a little boy, and he gets a UTI, that requires investigation immediately," said Luby, who is now working to raise money for research and awareness for PUV and other congenital abnormalities of the kidney and urinary tract.
She also wants more widespread testing for PUV so more cases can be caught early.
CTVNews.ca Top Stories
From AI running wild to collapsing ecosystems, government report outlines future disruptions
From collapsing ecosystems to artificial intelligence running wild, a new Canadian government report outlines 35 disruptions that could rattle the country in the coming years.
B.C. serial killer Robert Pickton hospitalized after prison attack
British Columbia serial killer Robert Pickton was attacked and sustained life-threatening injuries in a Quebec prison Sunday in what officials described as a 'major assault.'
opinion Tom Mulcair: With Trudeau spiralling, Mark Carney waits in the wings
In his latest column for CTVNews.ca, former NDP leader Tom Mulcair argues that if there's an unofficial frontrunner in the eventual race to replace Justin Trudeau as Liberal leader, it has to be former Bank of Canada governor Mark Carney.
Toronto Blue Jays fan struck by 110 m.p.h foul ball offered tickets, signed baseball by team
The Toronto Blue Jays have offered tickets and a signed baseball to a fan who says she was struck in the face by a 110 m.p.h (177 km/h) foul ball at Friday’s game.
Matthew Perry's death is being investigated over ketamine level found in actor's blood, reports say
An investigation has been opened into the death of Matthew Perry and how the “Friends” actor received the anesthetic ketamine, which was ruled a contributing factor in his death.
OPP continues to investigate boat collision north of Kingston, Ont. that left 3 people dead
Ontario Provincial Police continue to investigate a long weekend fatal boat collision on Bobs Lake, north of Kingston, Ont.
Police in Ontario say suspects charged in armed home invasion near Toronto part of 'larger criminal network'
Police in Ontario say a group of suspects charged in an armed home invasion north of Toronto last year were driving a vehicle stolen in a carjacking in Calgary just one month earlier.
Stolen septic truck swerves through traffic, spike belt needed to stop it: Manitoba RCMP
A 29-year-old woman has been charged after police say she stole a septic truck from a Manitoba community and drove erratically on the highway.
Orphan orca's extended family spotted off northeast side of Vancouver Island
Members of a killer whale pod related to an orphan orca calf that escaped a remote British Columbia tidal lagoon last month have been spotted off the northeast coast of Vancouver Island.