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Baby was born with a huge tongue, ‘but wait until you see what the doctors did’!

by Jessica

Paisley’s parents revealed that their daughter was born with a rare genetic disorder known as Beckwith-Wiedemann Syndrome, which caused her tongue to grow to the size of an adult’s. This condition posed a life-threatening risk to Paisley, as her oversized tongue could potentially block her airway, making it impossible for her to breathe independently during her first week of life.

Fortunately, Paisley’s life was saved through the dedicated efforts of a skilled medical team that included doctors and surgeons. Following a complex surgical procedure, Paisley can now experience the joy of smiling. Beckwith-Wiedemann Syndrome is a rare disorder affecting approximately one in 14,000 newborns, causing abnormal and rapid growth of the baby’s tongue.

Paisley’s tongue was twice the size of her mouth at birth, rendering her incapable of breathing and feeding on her own. For the first six months of her life, she relied on a feeding tube implanted in her stomach for nourishment. Her disproportionately large tongue often protruded from her mouth, and she would chew on it due to the lack of space.

Medical professionals were deeply concerned that Paisley’s tongue might obstruct her airway and endanger her life immediately after birth. Her parents were informed that her tongue was one of the largest they had ever seen. Remarkably, after a week of assisted breathing, Paisley gradually began to breathe independently.

Paisley’s distinct appearance drew attention from strangers, resulting in curious stares and inquiries when her mother took her out of her stroller. At six months old, Paisley underwent her initial surgery, during which surgeons removed five centimeters of her tongue. Regrettably, this proved insufficient, as her tongue grew back in the following four months, necessitating a second surgery. Thankfully, the second operation was successful.

Following the second surgery, Paisley delighted her parents with her first-ever smile. Her mother described her as a completely transformed baby—her facial appearance changed, she smiled frequently, and she was on the verge of uttering her first words.

Medical professionals are now optimistic that further surgical interventions will not be necessary for Paisley. While she may require the guidance of a speech therapist in the future, her prognosis suggests that she will lead a life similar to that of any other child.

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