SCID Kids' Caregivers - Page 6 of 7

With her fellow NAIHS pediatricians at the Tuba City medical center and throughout the region, Hu is the SCIDA patients' constant caregiver. She may well have seen more of the children she calls "SCID kids" than any other primary care pediatrician.

When she cared for her first Navajo child with SCID, Hu was an intern at the University of Colorado in Denver with a background in immunological science. She worked with immunologist Anthony Hayward, one of the first to recognize SCID symptoms in Navajo babies, and in 1985 brought her interest in the disorder to her post with the Indian Health Service. Hayward was on sabbatical, referring SCID patients to UCSF, when Hu phoned Cowan about baby Shailene.

"I doubt many rural primary care doctors had as much experience with SCID as we did here in Tuba City," Hu says. "I think I kind of blew Mort away." Several weeks later, with Shailene and her parents at UCSF, a NAIHS colleague called her for a consultation about baby Jolana's similar symptoms. When Hu called Cowan that second time, neither was aware that they were establishing a partnership with a whole region of families.

The collaboration with UCSF is only part of the teamwork that NAIHS pediatricians use to care for the SCID kids and other Native American children in the Four Corners region. Early detection is an important part of treating SCID, and the pediatricians educate all the health workers who may care for a mother and young infant. "There are no obvious signs that are unique to SCID," Hu says. "Many babies have recurring infections, for example, but most are not immune deficient." It takes extra vigilance to recognize that SCID testing may be necessary for some infants.

Hu would like to see SCIDA more widely understood among doctors outside the region. "We are very good at recognizing SCID on the reservation," Hu says. "But people with an autosomal recessive gene for SCIDA and other types of this disease live all over the country. Doctors need to know that if they suspect that an infant has SCID, there are resources to diagnose and treat these patients."

One of Hu and Cowan's patients, Chastity Neztsosie, was born in a city with few Navajo and no Indian Health Service doctors. Doctors there could not suggest a treatment for her recurring infections and failure to thrive. Her SCIDA was discovered when her parents brought her into the Tuba City hospital during a visit home. Her bone marrow transplant at UCSF at first seemed successful, but eventually complications of the treatment took her life. For their next two babies, Geneva and Wilfred Neztsosie asked for prenatal testing; both children are healthy.

Dynamic and down-to-earth, Hu takes the classic pediatrician's approach to her patients' care, helping parents focus on the whole child, on emotional and social development as well as physical health.

"That becomes a big challenge when the SCIDA baby grows up to a toddler," Hu says. The children need preschool for its learning environment and the socialization that comes from playing with other kids. Yet like preschoolers everywhere, their classmates frequently have infections that could be dangerous for the SCIDA kids.

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Page 2 - Translating Science

Page 3 - SCID Genes

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