Parents hope fish oil can spare son's liver

The white liquid pumping continuously through Braxton Anderson's intravenous feeding tube has kept the 7-month-old alive since the day he was born.

There's just one problem: This life-giving supplement could also kill him.

The liquid — used nationwide by a small but growing number of children with intestinal failure — is believed to contribute to liver disease in some children. Many youngsters who start out needing an intestinal transplant end up also needing a new liver.

Braxton's liver could shut down in the next three to six months.

But doctors in Omaha and elsewhere have hope that a new supplement won't lead to liver disease.

The supplement, Omegaven, is approved for use in Europe but not yet in the United States. American hospitals, however, can seek permission from the Food and Drug Administration to use it for individual patients and for clinical studies.

The Nebraska Medical Center recently began giving it to two children and intends to give it to Braxton and others soon to study its effectiveness. Dr. David Mercer, a transplant surgeon at the hospital, expects to enroll more than 100 children in the study over the next two to five years.

Use of the current supplement isn't widespread — about 3,000 babies and children nationwide are on it long-term. But an increasing number of families are relying on it as more premature babies survive.

The treatment is a double-edge sword, said Braxton's father, T.R. Anderson of Alda, Neb.

"He has to have it — but it could kill him," Anderson said. "You feel pretty helpless."

Braxton's current intravenous nutrition — Intralipid — is made mostly of calorie-rich soybean oil that provides all the nutrients a child needs.

Doctors theorize that if a child consumes the liquid for more than a month, the body can start to convert the soy's fatty acids to toxins that contribute to liver disease.

The new supplement is made mostly from fish oil and provides the same nutrition levels, without the liver damage. Side effects, such as blood thinning, are uncommon and have not caused serious problems, Mercer said.

The new supplement costs about $70 per day and typically is not covered by insurance because it is not FDA-approved, Mercer said. The Nebraska Medical Center hopes to help families pay for it through hospital funds or outside money.

Mercer said about 20 doctors and hospitals in the United States are using it.

Children's Hospital in Boston, the first in the country to use the fish oil supplement, has given it to 118 patients since 2005, said Kathleen Gura, a clinical pharmacist at the hospital.

All the patients suffered from liver disease, Gura said. The livers of most patients became healthier, although the new supplement did not work in cases of advanced liver disease.

Braxton, born with part of his intestines outside his body, began showing signs of liver disease within a month of birth. For now, the disease's main effect has been jaundice.

Mercer said the infant's liver could be working at 100 percent within six to 12 months after starting the new supplement.

Braxton has about 15 inches of healthy small intestine, about 15 percent of what he needs, so it's difficult for his body to process and absorb nutrients through regular feeding. Future surgeries would lengthen his intestine, which could allow him to eat regular food.

Despite his liver and intestinal problems, Braxton is strong, Mercer said. His lungs and heart are healthy, and his weight — 17 pounds — is good. He loves to kick his chubby legs and cuddle his doggie blanket.

Braxton's father dreams that his son will grow up playing football and riding in rodeos, just like he did.

"We're hoping he gets strong and becomes a normal kid."

• Contact the writer: 444-1122, michael.oconnor@owh.com