Ukiah woman turns grief over losing son into effort to protect kids from disease

GLENDA ANDERSON
THE PRESS DEMOCRAT

Clare Hoang, 31, smiles as she and her 3-year-old son Gryphon lead his Ukiah-area preschool class in singing "Do You Know the Colors of the Rainbow."

But the smile cannot hide the sadness in her face.

Gryphon's identical twin brother, Phoenix, died last month from a rare and virulent disease, meningococcemia, which infects the bloodstream and attacks organs. It is caused by the same group of bacteria that can cause meningitis, which affects the brain and spinal column.

The bacterial infection struck swiftly, stopping his heart about 12 hours after the onset of flu-like symptoms, she said. He was revived but then taken off life support two days later when tests showed he was brain dead.

At times, "I feel like I'm going to cry my heart through my mouth," Hoang said.

She's emerged from the depths of grief to tell her story in hopes it will save other children.

Hoang has begun campaigning to vaccinate young children for infections caused by a group of bacteria called Neisseria meningitidis, the type that killed her son.

"No child should die from something that is preventable," she said.

Hoang plans to speak before a federal panel of experts responsible for establishing vaccination routines -- the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices -- in June.

She joins the debate over the benefits and pitfalls of trying to vaccinate against meningococcal disease.

Some health officials say the benefits are dubious because current vaccines for infants are effective against only about half of the types of bacteria that cause meningococcal disease. Parents say they want whatever protection that is available for their children.

The CDC vaccine panel has recommended that Neisseria meningitidis vaccine be regularly given only to children over age 11 unless they travel to countries where the disease is prevalent or they have a compromised immune system.

The vaccine also is highly recommended for young adults heading off to college or the military, where close quarters makes transmission more likely. It usually is spread through saliva or respiratory droplets.

Dr. Amanda Cohn, who specializes in meningitis at the CDC, said she could not speak for the panel but reasons for not recommending meningococcal vaccines at young ages could be related to the rarity of the disease and because the vaccine is less effective at younger ages.

Phoenix's death was the first fatality in Mendocino County since 2008, when another infant about 2 years old succumbed to the infection. Sonoma County's last fatality was a 27-year-old in 2010.

Nationwide, about 800 cases a year of Neisseria meningitidis are reported and 10 to 15 percent are fatal, she said.

The disease has been in decline nationally. In the 1990s, there were closer to 3,000 cases reported each year. It's also on the decline in California, where 112 cases were reported in 2011 compared with 215 in 2002, according to the state health department. Fourteen deaths were reported in California last year.

"It's very rare in this country," Cohn said.

But even one death is too many, Hoang and other vaccination advocates say. Survivors often are left with debilitating conditions, including amputated limbs, deafness and blindness, they say.

Hoang is working to create an advocacy foundation and has joined an Internet petition drive seeking to change vaccine policies on meningococcal vaccines for infants.

Any safe vaccine that provides protection against the disease is worth giving, said Lynn Bozof of Atlanta, co-founder of the National Meningitis Association. She became an advocate for vaccinating after losing her college-age son to meningococcemia in 2008. His legs and arms were amputated in an effort to save his life before he died, Bozof said.

Until then, she was unaware that there was a vaccine for the disease and that it was regularly given to young men joining the military.

"There's no getting over the loss of a child. What makes it worse is knowing it didn't need to happen," she said.

No one told her then that there was a vaccine available, just as Hoang was not told about the vaccine available today. Bozof said her organization was instrumental in expanding the use of the vaccine.

As long as it's not on a list of recommended vaccines for young children, pediatricians are unlikely to include it in their immunization talks with parents, Bozof said.

Infants are regularly vaccinated for Haemophilus influenza type b, which once was the most common cause of bacterial meningitis in the United States, according to the CDC.

Vaccines for several types of Neisseria meningitidis also are licensed for use in children as young as 9 months and are considered very safe but are not recommended as part of a child's regular vaccination schedule, Cohn said.

Cohn said available vaccinations provide limited protection because current inoculations do not include all the strains of Neisseria meningitidis.

Younger children also need multiple vaccines to develop immunity and require frequent boosters, she said.

Another complicating factor is the role that insurance companies play. They won't pay for the vaccines and public health departments cannot administer them unless they're on the CDC list, said Mendocino County Public Health Officer Dr. Craig McMillan.

Private physicians have a choice in whether to administer the approved vaccine.

Blair Wickliffe of Ukiah said she contacted her pediatric group, Ukiah Valley Rural Health Center, and requested the vaccine for her three children. She said she was willing to pay for the vaccine, which costs more than $100 per dose, but was turned away by a nurse who told her it wasn't necessary.

"I told her, 'I went from seeing my friend's son playing on Wednesday to being brain dead on Thursday night, and you're telling me it's not necessary?' "

Office staff for the group, which has six listed doctors, said physicians were unavailable to comment.

Hoang said any chance to prevent a child's death is worth the cost and effort, even if the vaccine is only partially effective. She is supported in her efforts by her husband, Bart, who works in the computer information services field.

The disease attacked Phoenix with a swiftness that she did not know was possible.

The child woke up Feb. 9 with a mild fever but played with his brother, ate breakfast and played some more.

After a 2 p.m. nap, he began vomiting and having diarrhea and his temperature spiked to 104 degrees. Hoang rushed him to the hospital, where he became increasingly ill. He had apparent hallucinations and fell off the toilet, she said.

Doctors conducted a spinal tap, put him on antibiotics and had him flown to Oakland Children's Hospital under anesthesia to ease his pain, Hoang said.

At about 2 the next morning, Gryphon was sleeping in her arms when he began laughing. He sat up, hugged the air and said, "I love you."

She learned later that Phoenix's heart had stopped for 15 minutes at about the same time.

"Phoenix had come to say goodbye to Gryphon," she said.

Gryphon is struggling with the loss of his twin, with whom he was very close, Hoang said.

"He'll go, 'Momma, can you just go up to the stars and get him?' " she said.

You can reach Staff Writer Glenda Anderson at 462-6473 or glenda.anderson@pressdemocrat.com.

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