Presque Isle infant needs stem cell transplant to beat life-threatening illness

PRESQUE ISLE, Maine Brylee Ann-Marie Gagnon, born Aug. 8 at The Aroostook Medical Center to Shandi Page and Chad Gagnon of Presque Isle, was considered a healthy child at birth, weighing 8 pounds, 13 ounces. But in the few short weeks afterward, Brylees family discovered she suffers from a life-threatening illness.

She appeared to be the picture of health. Doctors had no concerns with her and after a one-day stay in the hospital, baby and Mom were discharged and sent home, said Debby Page, Brylees maternal grandmother.

Like some newborns, Brylee had a few problems with gas and what seemed to be cramping during her first week at home, said her grandmother.

She was brought in to see the doctor and her formula was changed. But that did not seem to improve things. Then suddenly when she was 10 days old, she spiked a fever of 104 degrees. She was rushed to TAMC where they decided to LifeFlight her out to Bangor immediately, said Page.

Page said the family later found out that doctors did not expect Brylee to survive the trip, but against all odds she did.

Brylee spent nearly a week at a neonatal intensive care unit in Bangor. After what Page describes as dozens of tests, doctors determined Brylee had a serious infection in her blood and gastrointestinal tract.

She was then transferred to Portland to meet with a pediatric gastroenterologist. She ended up spending a month in the hospital to be sure the infection was completely gone, Page said. It was during this time that the underlying problem was discovered.

Brylee was diagnosed with leukocyte adhesion deficiency, a rare disorder that affects the bodys immune system. According to the Centre of Immunodeficiency, only about 300 cases of the genetic disorder have been diagnosed worldwide. The disease occurs when white blood cells are unable to produce enough of a specific protein that helps them travel to the site of an infection.

We have been told only three or four babies a year are born with it in the U.S., said Page. It basically means her immune system is not functioning, and she cannot fight off any bacteria or fungi.

Page said doctors indicated most babies born with this disease will die of an overwhelming infection before their first birthday unless they get a stem cell transplant.

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Presque Isle infant needs stem cell transplant to beat life-threatening illness