'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
Robert Pickton to remain in medically induced coma until later this week: police
Serial killer Robert Pickton will remain in a medically induced coma for at least the next few days following an attack in a Quebec prison Sunday, according to police spokesperson Hugues Beaulieu.
Charlie Colin, founding member of the pop-rock band Train, dies at 58
Charlie Colin, bassist and founding member of the American pop-rock band Train, best known for their early-aughts hits like 'Drops of Jupiter' and 'Meet Virginia,' has died. He was 58.
'Five feet nothing': Pickton's safety likely behind Quebec transfer, says ex-prison judge
When serial killer Robert Pickton was transferred from British Columbia's Kent Institution to a maximum security prison in Quebec about six years ago, correctional authorities gave no public explanation or confirmation at the time, citing privacy.
'I feel betrayed': Ottawa-area customers out thousands of dollars warn of bad faith contractor
A group of people from eastern Ontario and western Quebec is issuing a warning about Dennis Walker and his company Vue Windows.
Fancy pigeon outfitted in custom diaper has free rein in B.C. family home
When Chrissy Chin volunteered to take in a fancy pigeon abandoned on a park bench, she never imagined she would one day be ordering custom-made diapers for the bird – who lives in her house and has become a member of the family.
'We'll need all hands on deck': Details emerge after deadly boat crash near Kingston
Police say they have wrapped up their on-scene investigation into a deadly boat crash in eastern Ontario as details of the incident begin to emerge.
WestJet planning new fare category for travellers willing to forgo carry-on bag
WestJet Airlines plans to launch a new cheaper fare category that would be available to travellers willing to fly without a carry-on bag.
5 dead and at least 35 hurt in Iowa tornado: officials
Five people died and at least 35 were hurt as powerful tornadoes ripped through Iowa Tuesday, with one carving a path of destruction through the town of Greenfield, officials said.
Woman found dead in Lake Ontario in 2017 matches identity of missing person in Switzerland
Genetic genealogy has helped Toronto police identify a woman who was found dead in Lake Ontario in 2017.