With a toddler's aplomb, Ellie Brogan gives a tour of her body's plumbing. The pouch tucked into her diaper is "my ostomy." A hole in her stomach that hooks to a feeding tube is "my button." "My central line" feeds nutrients to a vein near her heart.
But after show and tell, Ellie scampers around the house like any other child, her blond curls bouncing.
You'd never know that when she was just a day old, doctors warned Abby and Gib Brogan that their daughter, born with just a tiny fraction of her small intestine and missing some of her colon, would probably need a liver transplant or die by her first birthday.
Now, 2 1/2 years later, Ellie is one of more than 100 children with rare "short bowel syndrome" who have received a therapy pioneered at Children's Hospital Boston. It uses an old-fashioned substance - fish oil - to keep their livers healthy, and doctors and Ellie's parents say it helped save her life.
Babies like Ellie, who lack the ability to digest food or absorb nutrients, need to be fed intravenously. But the IV nutrition also damages their livers.
Dr. Rusty Jennings, a pediatric surgeon and one of Ellie's doctors, described the double-edged sword physicians faced when treating such patients: "You can't not give it [the IV nutrition] to them or they'll die of malnutrition. You do give it to them, and they die of liver disease."
Then came an unusual leap of medicine from the lab into the clinic.
In experiments in mice, Dr. Mark Puder, a Children's Hospital surgeon, and colleagues found that using a nutritional supplement made with fish oil instead of the standard one, made from soybean oil, did not cause liver damage.
In 2004, a desperately ill baby on IV nutrition in Jennings's care faced liver failure, and he approached Puder.
With approval from the US Food and Drug Administration, the hospital's institutional review board, and the parents, Puder changed the IV nutrition, swapping a fish oil formula for the standard fat supplement.
"At about a month, he started getting better," Jennings said. "It was just freaking amazing - I couldn't believe it."
From that single case came a shift in treatment. So far, 112 children at Children's Hospital - Ellie Brogan among them - have been given the fish oil, called Omegaven. The treatment is now available at 70 hospitals around the world. Parents call it a miracle.
Although the data have not yet been published, Puder said that more than 90 percent of the Children's Hospital patients are alive. He noted that the hospital often sees children who arrive from elsewhere in very bad shape and may be beyond the help of Omegaven because the therapy wasn't started sooner.
"Now we see, the sooner we start, the better we do," Puder said. It is not known whether the patients will now live close to a normal lifespan.
The Brogans are committed to telling their story and giving other parents hope through a blog that chronicles their journey.
Their lives have changed. Abby has switched fields and jobs. They moved from Connecticut to be closer to Boston. The couple, trained as marine biologists, say they have new respect for the oily fish used to make Omegaven - menhaden (also known as the common pogy). They have watched their little girl, whose eyes and skin were once yellowed by liver failure, develop more healthy coloring.
At the beginning of December, as she has improved, Ellie was taken off IV nutrition and the fish oil. She is eating food on her own, and her doctors hope her bowel will continue to adapt and allow her to live a more normal life.
"We think if it hadn't been for this," Gib Brogan said, "she might be post-transplant or she might not be with us."
Bonnie - this is truly amazing stuff. I commend the doctors for thinking out of the box.
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