'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.