(NEW YORK) — Olivia Gillies was born with a potentially life-threatening condition that caused her tongue to grow uncontrollably. Now, after her third surgery, the 2-year-old can finally smile, and doctors believe the dangerous symptom of her condition is under control.
Gillies was born with Beckwith-Wiedemann Syndrome, a genetic condition that can cause, among other symptoms, “overgrowth” of a particular body part, including the spleen, liver, adrenal glands and tongue.
An ultrascan revealed abnormalities when Gillies’ mother, Emma, was seven months pregnant with her, the Daily Mail reported. The scan showed Gillies had an abnormally large tongue. Eventually, she was diagnosed with Beckwith-Wiedemann Syndrome.
Beckwith-Wiedemann Syndrome occurs due to a number of genetic causes, most commonly problems with chromosome 11. Either a genetic “switch” in that chromosome is turned off, affecting a gene that is supposed to suppress cell growth, or the newborn receives two chromosome 11s from the father, and none from the mother.
It can manifest in several ways, including overgrowth of a particular body part or parts, low blood sugar, and omphalocele, a birth defect in which the infant’s abdominal organs stick out of the belly button and are covered with a thin membrane, Dr. Debrosse, a clinical geneticist at UH Case Medical Center in Cleveland, Ohio, told ABC News.
Babies with Beckwith-Wiedemann Syndrome are also often born early.
Emma was scheduled to have a Caesarean section at 38 weeks, but went into labor early, and Gillies was born after an emergency operation on March 3, 2010, according to the Daily Mail.
Gillies’ tongue was oversized and protruding from her mouth when she was born, and she had to be tube fed because she couldn’t latch onto her mother’s breast to breast-feed. She was kept in the hospital for six weeks after she was born.
Her tongue continued to grow, eventually becoming so large that it made it difficult to breath. She had to be readmitted to the hospital for a tracheotomy — a surgery that would cut a hole into her neck to aid her breathing.
Eventually, her breathing stabilized enough that she could undergo surgery to reduce the size of her tongue, when she was just six months old. Four months after that surgery, she went back home, and her father became her full-time care-taker, the Daily Mail reports.
However, her tongue continued to grow, and she had to undergo another operation just seven months after the first surgery. After a third — and her parents hope, final — surgery, Gillies’ tongue appears to have stopped growing. The 2-year-old is now finally able to smile, and is learning to eat and talk.
Copyright 2012 ABC News Radio
Karen Lehr, KIVI
Josh Friesen, Idaho State Journal
Magdala Louissaint, KPVI
Susan Scutti, CNN