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Meet some of our patients
Lucy, age 5
Lucy was born with Crouzon's syndrome, a rare condition thought to affect one in 25,000 births. Caused when the skull's plates fuse together prematurely, it affects head and facial development. Children with this condition can experience breathing and speech difficulties.
Lucy was first admitted to Great Ormond Street Hospital at four months old. A shunt was placed in her head, to relieve pressure caused by hydrocephalus, or water on the brain. By two years old she was using feeding and breathing nasal tubes.
In June 2004, Lucy stopped breathing and had to be resuscitated. In November 2004, she had a piece of bone at the base of her skull removed for the second time, which had been pressing on the brain. This helped ease her breathing problems.
Lucy also had an operation to pull the front of her skull and face forward into a better position. She wore a special head frame for nine weeks to relieve raised intercranial pressure and help enlarge airways. A vault expansion the same year relieved pressure on her brain.
At Great Ormond Street Hospital, Lucy has benefited from speech and language therapy, and has learnt to use sign language. She spent 15 months living at Great Ormond Street Hospital, needing constant medical supervision and artificial ventilation every night. Lucy now has a care package which enables her to live at home, she is thriving at nursery school and attends the hospital as an outpatient.
