Bubble Girl: Better Screening, Treatments Offer Hope for Kids with Immune Disorder

May 16, 2013 at 5:15 pm

Bubble GirlBy Erin Digitale, Staff Writer for the department of Communication & Public Affairs at the Stanford School of Medicine

For most of Isabella Messina’s first year of life, people who wanted to see her had to squirt their hands with sanitizing gel, pull open the heavy door of the Bass Center for Childhood Cancer and Blood Diseases at Lucile Packard Children’s Hospital, and walk across a strip of sticky flooring that took dirt off their shoes. Isabella’s visitors stopped at the unit’s scrub sinks for a vigorous two-minute hand washing, then progressed down a much-mopped floor through fluorescent-lit hallways equipped with negative-pressure ventilation to keep out germs. At the door of her room, they donned gloves, shoe booties, face masks and full-length, long-sleeved disposable gowns. When they finally entered the small room that was Isabella’s entire world, her doctors, nurses and family members looked oddly similar, distinguishable only by the small rectangles of face visible around their eyes.

The person who looked back at them — a baby with light brown hair and a keen smile — was too young to ask why she was confined to a hospital room, too little to understand that she had been born with almost no immune system. But she was quick to locate her favorite eyes, the large, liquid-crystal-blue pair that belonged to her mom, Kim, and the dancing brown eyes of her dad, Giovanni.

For their only child, Kim McFall and Giovanni Messina had eyes full of smiles. But when they left Isabella’s room, worry overtook their expressions. Isabella had been diagnosed at three weeks of age with a rare variant of severe combined immunodeficiency, the disorder known colloquially as “bubble boy disease” after a SCID patient whose confinement to a sterile environment was dramatized in the 1976 film The Boy in the Plastic Bubble. For her parents, Isabella’s diagnosis felt both lucky and painful. Because the disease was caught so quickly, Isabella was cocooned in the hospital, protected from run-of-the-mill infections that kill many SCID patients before their first birthdays. Early diagnosis also provided her with a much better shot at a successful treatment. However, to go home, she needed her immune system repaired via a stem cell transplant, a procedure with no guarantee of success.

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