Jordy’s Journey: Local parents share story of miracle baby
ONALASKA, Wis. (WKBT) — Jordy Rose made his grand entrance just four months ago and when he laughs, he might fool you into thinking life’s been pretty easy so far.
But parents Nicole and Ryan say ‘easy,’ isn’t a word they’d use to describe Jordy’s journey.
“We had the ultra sound and they told us everything was fine we went home, and then was it that night? And then the next day they called us and they were like we saw something we’re not sure about,” Nicole said.
This was the phone call that changed everything.
“They noticed that his bladder was really large.”
At 20 weeks, they learned Jordy had what affects only about one in 10,000 babies.
“One of the doctors told us he was going to die,” Nicole recalls.
Lower Urinary Tract Obstruction: A rare birth defect with a 90 percent mortality rate, commonly found in male fetuses.
LUTO prevents the passage of urine, causing back pressure on the kidneys.
“It causes all kinds of problems, like their lungs can’t develop and obviously if they can’t breathe, it’s hard to survive.”
Minutes started feel to like hours and after multiple trips to Madison, Nicole and Ryan found a doctor in Rochester who believed Jordy’s journey wasn’t going to end here.
“He was like, I’m going to fight for this baby, I’m going to do everything I can.”
At 26 weeks, Nicole underwent surgery, a tube was used to provide an alternate passageway for Jordy’s urine, which was stuck in his bladder.
He had a 50 percent chance of surviving.
“If I can stop that, I can improve the chance of survival rate,” said Dr. Ruano with Mayo Clinic in Rochester.
Dr. Ruano says he’s passionate about giving a chance to babies like Jordy.
“If I don’t treat these babies, they will die, the majority will die and only ten percent will survive.”
He’s also giving parents like Nicole and Ryan hope.
“To be told that there is even a 50 percent chance was so much better than zero.”
Jordy’s entrance was certainly grand, a little boy who learned to persevere before learning how to walk.
“He’s so extremely worth it, so worth it, he’s the best thing that’s ever happened to us,” Nicole said.
Jordy does now have stage three kidney disease but there is hope it’s only temporary.
To contact Nicole with any question, you may find her Facebook page under Nicole Rose.
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