Newborn battles 1 in 391,000 disease
Joleen Beaubien, of Bigfork, holds a photo of her grandson, Leroy Stiffler, who is currently in Seattle receiving treatment for a rare genetic disease that has caused his veins to narrow and harden. (Mackenzie Reiss/Daily Inter Lake)
Joleen Beaubien, of Bigfork, holds a photo of her grandson, Leroy Stiffler, who is currently in Seattle receiving treatment for a rare genetic disease that has caused his veins to narrow and harden. (Mackenzie Reiss/Daily Inter Lake)
Jackson Stiffler, of Kalispell, holds his newborn son Leroy at Seattle Children’s Hospital in August. Leroy is expected to remain at the hospital for at least three months. (Courtesy of Joleen Beaubien)
Brittany Ogle and Jackson Stiffler, both of Kalispell, pose for a photo with their son, Leroy Stiffler, who was born with a rare genetic disorder called generalized arterial calcification of infancy. The condition causes his veins to narrow and harden, forcing his heart to work very hard to pump blood throughout his body. (Courtesy of Joleen Beaubien)
Jackson Stiffler holds his son Leroy’s hand at Seattle Children’s Hospital. (Courtesy of Joleen Beaubien)
Leroy Stiffler undergoes treatment for generalized arterial calcification of infancy at Seattle Children’s Hospital in August. Leroy was born via c-section at 32 weeks so doctors could begin treatment. (Courtesy of Joleen Beaubien)
Jackson Stiffler and Brittany Ogle check on their newborn son, Leroy Stiffler at Seattle Children’s Hospital. (Courtesy of Jolee Beaubien)
It was just supposed to be a routine exam.
But when mother-to-be Brittany Ogle went in for her appointment in early August, everything changed.
She measured large for being 32-weeks pregnant and doctors wanted to take a closer look.
That’s when they realized there were complications — an ultrasound showed that her unborn baby had an abnormal buildup of amniotic fluid and mysterious white spots throughout his body.
What was even more concerning is they weren’t sure what was causing it.
“They kept him in utero as long as possible, but Wednesday it became critical so they did a C-section,” said Ogle’s mom, Joleen Beaubien. “They weren’t seeing the results from the heart that they wanted to see — it was looking pretty meek.”
Doctors flew Ogle to Seattle, where she was admitted to the University of Washington Medical Center while her newborn son, Leroy Kenneth Stiffler, went to the Seattle Children’s Hospital.
Leroy, who was born Aug. 9, weighed in at 6 pounds, 4 ounces — well within the normal range. For all appearances, the newborn seemed completely normal, but the reality was far from it. Roughly a pound of his bodyweight was the result of an edema, or fluid buildup. And the white spots? Those were calcium deposits that were both narrowing and hardening his veins and arteries, forcing his heart to work even harder to pump blood around his body.
In Seattle, doctors delivered the diagnosis: Leroy had a rare genetic disease that affects 1 in 391,000 babies born in the U.S., called Generalized Arterial Calcification of Infancy (GACI).
His parents, Ogle and Jackson Stiffler, of Kalispell were both carriers.
“I think they’re holding up amazingly — they’re both 23,” Beaubien said. “They’re asking brilliant questions. They’ve had to grow up.”
The new parents are expected to stay for a minimum of three months in Seattle while Leroy undergoes critical, life-saving treatment to reduce the calcium in his blood vessels. The new parents are understandably scared, Beaubien said, but holding up well under the circumstances.
“It’s like all emotions run together and there is a constant stress that no matter how much good news we get, as long as he is at the hospital, the stress seeps back into my bones,” Jackson said, via text. “I always come back to two thoughts: one that I try not to think about at all, and two seems like a wonderful dream that I can’t wait to come true — when we get to take him home.”
The excitement of being first-time parents has been tempered by the many unknowns in Leroy’s future, but perhaps one beacon of light comes from the fact that the disease is treatable. Currently, Beaubien said the most critical task is restoring Leroy’s gut health so he can stomach the oral medication needed to combat the calcification. He is receiving intravenous nutrition and mere milliliters of breast milk each day. For the first couple weeks, he was placed on a ventilator so Leroy could channel all available energy to his heart, but has since been taken off the device.
“The first six months is really the most critical,” Beaubien said. “It’s looking more optimistic now that most of those other systems are kind of balanced.”
As for the long-term, Beaubien said Leroy will likely suffer from heart-related problems for the rest of his life such as an enlarged heart, high blood pressure, respiratory distress and an increased risk of heart failure. Doctors told the family treatment would also be long-term, but as to exactly how long, they were uncertain.
“I think the heart has already been stressed so much, so I don’t know if that can be repaired,” she said.
Ogle and Stiffler are also grappling with the financial side of Leroy’s treatment, which hit $150,000 within the first few days of care. Beaubien said the couple has a $13,000 deductible, plus three months worth of expenses to pay for out of pocket — all totaling around $20,000. They’ve been fortunate to be admitted into Seattle’s Ronald McDonald House, which provides free accommodations and meals for families of sick children, but the family has set up a GoFundMe account and donation fund at Parkside Credit Union.
“It’s brought us all closer together. Brittany and Jackson, they’ve both said it’s made them stronger as a couple — and I watched it happen,” Beaubien said. “It just makes you stop and think all of those parents who are sick and tired of hearing their baby cry — that’s our only wish is to be able to hear him cry. … We’ll never take a minute for granted with him.”
For updates on Leroy’s condition, or to help fund his medical expenses, visit the following:
Facebook: www.facebook.com/babyleroystiffler
GoFundMe: www.gofundme.com/babyleroy
Parkside Credit Union: /www.parksidefcu.com
Baby Leroy Stiffler (Ogle) Fund
c/o Parkside Credit Union
660 Sunset Blvd Kalispell, MT 59901
Reporter Mackenzie Reiss may be reached at 758-4433 or mreiss@dailyinterlake.com.