Different River

”You can never step in the same river twice.” –Heraclitus

February 27, 2005

Great Moments in Socialized Medicine

Filed under: — Different River @ 10:00 pm

Here’s an amazing story, this time (as usual) from the British National Health Service (NHS). This time they didn’t remove the healthy kidney instead of the diseased one (killing the patient), or amputate the wrong leg (the other one still had to be removed), or leave an aborted fetus in a jar in the mother’s room.

No, this time they just caused an little girl an incredible amount of inconvenience for seven and a half years of her so-far eight-year-old life.

From the time Tilly Merrell was a year old, doctors told her family she would never have a normal life — or even a normal meal.

British [National Health Service] doctors found that the food she swallowed went into her lungs instead of her stomach, causing devastating lung infections. They said she had isolated bulbar palsy, and their solution was to feed her through a stomach tube. Forever.

But having a backpack with a food pump wired to her stomach wasn’t much of a life for a girl whose favorite smell is bacon frying — a girl who once broke through a locked kitchen door in an effort to sneak some cheese. So her family got help from their community of Warndon, about 120 miles north of London, raising enough money to take Tilly, now 8, on a 5,000-mile journey they hoped might change her life, a journey to Lucile Salter Packard [i.e., privately funded] Children’s Hospital at Stanford University.

Doctors at Packard were intrigued that she had no neurological symptoms often associated with the palsy. In all other ways, she was a normal child with a mischievous smile and a truckload of energy. After seeing her Feb. 7, they ran three tests and found out what was wrong with her.

Nothing.

She had infections, certainly, but they were long gone. And when she swallowed something, it went into her stomach, not her lungs.

Doctors prescribed occupational therapy, figuring that Tilly’s body and mind needed to be conditioned, after 7 1/2 years of struggling, so that it would be all right to eat normal food.

Did it work? The proof is in the pudding. Or maybe in the breakfast sandwich that Tilly sampled at a Palo Alto Jack in the Box.

“I had a burger with cheese, bacon, egg and ham,” she said Wednesday, relishing the moment like a kid in a candy store. “And some hash browns with grease.”

But after being on normal food for more than a week, ice cream is the flavor of the month.

[G]one is the black backpack she wore to school. It held a liquid food concoction that had to be pumped into her stomach three times a day for two hours at a time. Those were her meals.

Until this month, Tilly often had to go off into another room with her PlayStation during family meals. She would always try to sneak morsels of food, not fully understanding the British doctors’ warnings about how much harm they could cause.

After five years of searching the Internet, Sonia Merrell found a story about how a girl with a similar condition was trying to get treated at Packard.

She faxed Tilly’s records to the hospital, and doctors said they might be able to help but would have to see her. The family and the community held fund- raisers to bring in more than 10,000 pounds (almost $20,000) to pay for the trip and what they thought might be surgery for Tilly. Children at a community center even collected more than 300 pounds (about $575) to give their playmate some spending money.

After all, England is not exactly a backward nation when it comes to medicine. [Really? Sure looks like it is!] Tilly had several cases of severe pneumonia as a baby, and her mother said that doctors in the socialized British system clung to the palsy diagnosis.

[Occupational therapist Marianna] Thorn is confident her patient will do well, but the family will need to monitor her weight to be sure it doesn’t drop. “Tilly was talking today about how she’s taking tiny bites because she used to try to sneak food,” she said.

(Hat tip: James Taranto.)

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