'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
More than 115 cases of eye damage reported in Ontario after solar eclipse
More than 115 people who viewed the solar eclipse in Ontario earlier this month experienced eye damage after the event, according to eye doctors in the province.
Toxic testing standoff: Family leaves house over air quality
A Sherwood Park family says their new house is uninhabitable. The McNaughton's say they were forced to leave the house after living there for only a week because contaminants inside made it difficult to breathe.
Decoy bear used to catch man who illegally killed a grizzly, B.C. conservation officers say
A man has been handed a lengthy hunting ban and fined thousands of dollars for illegally killing a grizzly bear, B.C. conservation officers say.
B.C. seeks ban on public drug use, dialing back decriminalization
The B.C. NDP has asked the federal government to recriminalize public drug use, marking a major shift in the province's approach to addressing the deadly overdose crisis.
OPP responds to apparent video of officer supporting anti-Trudeau government protestors
The Ontario Provincial Police (OPP) says it's investigating an interaction between a uniformed officer and anti-Trudeau government protestors after a video circulated on social media.
An emergency slide falls off a Delta Air Lines plane, forcing pilots to return to JFK in New York
An emergency slide fell off a Delta Air Lines jetliner shortly after takeoff Friday from New York, and pilots who felt a vibration in the plane circled back to land safely at JFK Airport.
Sophie Gregoire Trudeau on navigating post-political life, co-parenting and freedom
Sophie Gregoire Trudeau says there is 'still so much love' between her and Prime Minister Justin Trudeau, as they navigate their post-separation relationship co-parenting their three children.
Last letters of pioneering climber who died on Everest reveal dark side of mountaineering
George Mallory is renowned for being one of the first British mountaineers to attempt to scale the dizzying heights of Mount Everest during the 1920s. Nearly a century later, newly digitized letters shed light on Mallory’s hopes and fears about ascending Everest.
Loud boom in Hamilton caused by propane tank, police say
A loud explosion was heard across Hamilton on Friday after a propane tank was accidentally destroyed and detonated at a local scrap metal yard, police say.