August 7, 2018 โ The following is excerpted from a story published by WGBH:
The FDA approved a drug last month that provides nutrition to children born with a scary condition. That approval is the result of 16 years of work by doctors and researchers at Childrenโs Hospital in Boston.
When Gib Broganโs daughter Ellie was born, he says at first everything seemed perfect. But things changed quickly.
โSoon after she was born, early, early one morning, she got very ill. She started vomiting dark green,โ Brogan said.
Ellie was rushed to the neonatal ICU, where doctors quickly realized something was very wrong.
โThey told us she had short bowel syndrome. She was missing 90 percent of her small intestine and 30 percent of her large intestine,โ Brogan said.
The NIH says short bowel syndrome affects about three out of every million people. Ellie had surgery to connect her intestines, but there wasnโt enough there to really work right.
โOn that first day the surgeon told us that she can be fed by I.V., but there is a bit of a race that comes when you feed an infant through an I.V.,โ Brogan said.
That race is to get them eating regularly as soon as possible. Because while you can feed newborns through an I.V, over an extended period of time, the fat that theyโre given, which comes from soybean oil, can damage their livers, meaning theyโll likely need a transplant.
By the time Ellie was transferred to Boston Childrenโs Hospital, at just a few weeks old, she already had the yellowed skin and eyes of jaundice โ a sign of liver damage.
โAnd one day we were sitting at Childrenโs and a doctor knocked on the door and he came in and said, โMy name is Dr. Mark Puder. I have something Iโd like to talk to you about,'โ Brogan remembered.
โAnd I approached the family,โ Puder said, โbecause we had developed something in the laboratory that weโd already given to some patients and had reversed that liver injury.โ
โHe sat down and he told us that there were a little over 20 kids that they tried using fish oil with,โ Brogan said, โand that in that limited number of kids they had seen great things with their livers โ that the damage had not progressed, and in some cases it had cleared up.โ
The Brogans agreed to be part of the trial. And it worked.

