He’ll Have Rare Disease At Birth But Early Treatment Of Flawed Immune System Could Lead To Normal Life

Doctors are preparing now for the November birth of Austin Tanner Altig. He already has been diagnosed with severe combined immune deficiency, an extremely rare and potentially fatal disease.

Dr. Kelly Parkman of the Los Angeles Children’s Hospital said Austin is one of a half dozen cases ever to be diagnosed with the disease before birth. Common illnesses like pneumonia or even influenza can be fatal for SCID victims because their immune systems lack the ability to fight back.

“He’s a lucky kid in that we already know about it,” Parkman said. “Normally, he’d go home from the hospital and in three or four months start to get sick. If he caught a serious illness, he could become significantly ill, and his likelihood of being cured would be decreased.”

Instead, a 4-week-old Austin will be flown to Los Angeles to be treated. The treatments could give him a normal immune system before serious illnesses can strike. Unlike the SCID patient portrayed by John Travolta in the 1976 film “The Boy in the Plastic Bubble,” Austin has a good chance of living a normal life.

Fewer than 100 children a year are born with the disease, which is caused by a missing chain in the DNA sequence. Symptoms of the genetic defect occur only in boys, but girls who have it are carriers who may pass it on to their children.

Austin’s mother, Valerie Altig of Nampa, has a sister whose son died of complications related to SCID. The sister also has a son who was born without the disease.

Altig, who is 29 and single, worries about the medical bills, which she says could surpass $1 million. A legal secretary recently hired by a Boise law firm, she continues to pay premiums for health insurance from a previous job. But the policy has no maternity benefits. Altig says she will be responsible for at least $20,000 in deductibles, and her insurance company has hinted it may not cover her son’s treatments.

“It’s overwhelming,” she said. “First that I’m pregnant at all, then that he’s sick and now the worrying about whether the insurance is covering it.”

Austin, her first child, is scheduled to be born in November at St. Luke’s Regional Medical Center in Boise. A month later, he will go to Los Angeles for treatments.

The first treatment, Altig said, will be chemotherapy to destroy defective immune-system cells. Then Austin will receive a stem cell transplant, using either cells from his mother’s bone marrow or from blood taken from umbilical cords of babies already born.

After the transplant, Parkman will keep Austin under observation to make sure there are no complications. Altig will stay in a Ronald McDonald House in Los Angeles for three to four months.

“A lot of people said I should have an abortion,” Altig said. “I don’t agree. Just because he might die doesn’t mean we might as well kill him now.

“I’m doing what I think is best for him. He has a good chance of having a normal life. I’ll probably be paying bills the rest of my life, but it doesn’t matter as long as my son gets the treatment he needs.”