A terrifying, rare complication
The risk of a measles survivor getting fatal disease SSPE shows need for vaccinations, medical experts say.
Measles is commonly thought to be a one- time deal: Get it once, survive and you’re immune for life.
But like a Trojan horse, the virus can f ind a way to hide from a baby’s undeveloped immune system. The baby will survive, but within his or her body, a weakened form of the measles lurks, beginning to infect the brain.
Over the ensuing years, the disease gets stronger. Then the infected person, long past infancy, experiences mood swings and behavioral problems. Convulsions, coma and death follow.
There is no cure. It is always fatal.
There were at least 11 cases of this deadly complication, known as SSPE, or subacute sclerosing panencephalitis, after the 1988- 91 measles epidemic in the United States, which infected more than 55,000.
Dr. James Cherry, primary editor of the Textbook of Pediatric Infectious Diseases and a UCLA professor, said the complication underscores the need for measles vaccination rates to remain as high as possible, as inoculations have fallen in the last decade.
“Measles is not a benign disease,” Cherry said. And SSPE, he said, is a “horrible disease.”
The most vulnerable to getting SSPE are those younger than 2, who have an undeveloped immune system. Especially at risk are babies too young to get their f irst measles shot, which happens at 12 months.
That’s what happened to Ramon “Junior” Cortes, who was born in Orange County 26 years ago.
His mother, Marissa Cortes- Torres, was 24 when she gave birth to him. When Junior was a month old, Cortes- Torres became very ill.
Doctors didn’t figure out she had contracted measles until the baby fell ill. ( Cortes- Torres had been vaccinated in the 1960s, when mistakes were often made in administering the newly introduced inoculation.)
The infant was in the hospital for two months, hooked up to tubes, struggling to breathe.
By the time Junior was 3 months old, he seemed to have recovered.
Years later, in kindergarten in Escondido, he would stand when a teacher told him to sit. He struggled to add. At home, he would arbitrarily take clothes out of drawers. When he biked or roller- bladed, the boy would take surprising spills, bruising his legs.
Finally, a neurologist at Rady Children’s Hospital in San Diego said to Cortes-Torres, “I’m sorry to tell you: Your son is going to die.”
SSPE, she was told, “attacks the nervous system and it destroys the brain.”
It was the day before her son turned 7.
Soon, the boy who used to “swim like a little fish” became confined to a wheelchair.
Junior started to suffer tremors so severe he couldn’t feed himself. He became so frustrated that he would push his food away and refuse to eat. He had to wear diapers again. Seizures sapped his strength. When he hallucinated, all Cortes- Torres could do to try to soothe him was say, “Junior, Junior. Mommy’s here.”
One day, after he turned 9, he laughed while watching “Barney & Friends,” but he wasn’t looking at the television.
“I put my hand in front of his eyes,” Cortes- Torres said. “He was blind.”
Junior breathed his last breath a month later, on his mother’s lap.
There have been at least 16 cases of SSPE in California since 1998, which is likely an undercount because not all cases may be diagnosed and they aren’t required to be reported to the state, according to the Department of Public Health. There are several suspect cases that have not been confirmed.
Seven of the 16 confirmed cases involved people born in the United States. The nine other cases involved people born outside of the country who fell ill with SSPE in California.
Kathleen Harriman, chief of the state’s Vaccine-Preventable Diseases Epidemiology Section, said she often hears from people who say that getting a disease like measles naturally is best.
“I can’t even tell you how many times I’ve heard that … ‘ My child will be f ine, because I feed them really good food and they’re well- nourished and so they will survive measles,’ ” Harriman said. “This is a clear example where it’s not better to get a natural infection.”
Officials say they hear a report about SSPE about once a year in California.
In the Bay Area, a 4- yearold boy is currently dying of SSPE, said Dr. Catherine Sonquist Forest, medical director of the Stanford Health Care clinic in Los Altos.
The boy, born in the United States, was only 5 months old when he was infected with a severe viral illness. After he turned 3, the once- healthy child began to struggle with behavioral problems and seizures. Soon he was diagnosed with SSPE.
He is now in hospice care. His eyes are open, but he can no longer move on his own and cannot respond to commands.
“He was exposed because other people weren’t immunized,” Forest said.
This month, Forest recounted the boy’s diagnosis to a California Assembly committee on health. In a letter, she urged lawmakers to require that children, barring an allergy or other medical reason, be vaccinated as a condition of entry into school.
The Assembly passed the bill, SB 277, on Thursday. It must return to the Senate for an expected approval of minor amendments, and then would be sent to Gov. Jerry Brown for his signature. It is unclear whether he will sign the measure.
“As the mother of my patient told me last week,” Forest wrote, “‘ My child is dying because someone who chose not to be immunized exposed my vulnerable baby, and nothing can be done to save him.’ ”
‘ He was exposed because other people weren’t immunized.’ — Dr. Catherine Sonquist Forest, on a 4- year- old patient at the Stanford clinic in Los Altos
MARISSA CORTES- TORRES holds a photo of her son Ramon “Junior” Cortes, who died in 1998 after developing a fatal disease stemming from a case of measles.