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Girl Fed Through Feeding Tube for 7 Years Now Eating Orally

Comment: This story points out the inherent discrimination involved in the feeding tube issue. Obviously, the feeding tube was not considered extraordinary, risky “life support” for this little girl even though it was assumed at the time to be permanent. That’s because she had no cognitive disability, paralysis, etc. and that’s why cases like Terri Schiavo’s are about lethal discrimination against people with disabilities, not a refusal of unwanted medical treatment. [N. Valko RN]

An eight-year-old girl who has been fed through a tube all her life is eating normally for the first time after doctors discovered that the rare nerve illness she was diagnosed with as a baby was just enlarged tonsils. Tilly Merrell was fed directly into her stomach after doctors said that eating normally could kill her.

When she was 12 months old they diagnosed Isolated Bulbar Palsy, a weakness in the nerves controlling swallowing, meaning that food could enter her lungs instead of her stomach. As she grew up, Tilly was forced to wear a backpack providing her liquid feed through a hole in her stomach, which took two hours at a time to administer, three times a day. Her mother, Amelia, said that doctors “clung” to the diagnosis although they said that they suggested she might recover.

She contacted the Lucile Packard Children’s Hospital and they invited Tilly for tests. Her local community recently raised £10,000 to send Tilly to America for tests. Consultants there were intrigued that she had no neurological symptoms often associated with the palsy and they concluded that while she had had infections, they were long gone and food was now able to go straight to her stomach.

She is expected to lead a full and normal life. In the past few days, Tilly has been making up for lost time by eating burgers, chips etc.  [By Nick Britten, 26/02/2005;  Lucile Packard Children’s Hospital, Telegraph Group; N Valko RN, 26Feb05]