UCSF in Tuba City - Page 5 of 7

In an exam room at the Navajo Area Indian Health Services clinic in Tuba City, Courtney squinches up her face and draws her biggest breath of the day. She is playing a laptop video game to test her lung function. The bigger her breath, the more candles she can blow out on the video birthday cake. Everyone in her family is crowded into the exam room -- her mother and father, her big sister Brittney, who donated bone marrow 12 years ago and painted Courtney's fingernails red this morning; her two brothers who keep forgetting to remove their cowboy hats indoors. Everyone is shouting, "Go, Courtney!"

She inhales just a little more, then pours all the air inside her into the breath-capacity tube. Almost every video candle flickers out. In the midst of all the shouting and hugs, UCSF pediatric pulmonologist Gerd Cropp is beaming. "You did very well," he tells her.

The last time Cropp saw Courtney was during her hospitalization at UCSF a few years before.

This time, in June of 2002, he has joined Cowan, Abramovitz and Magary, plus Hu and her colleagues, for the annual SCIDA clinic in Tuba City. This is one of UCSF Children's Hospital's most remote annual outreach clinics, now entering its fifth year.

Navajo families used to come to UCSF for checkups one or more times a year, while Cowan traveled periodically to the Southwest to update parents and physicians about SCIDA, BMT and the children's long-term health.

As the numbers of patients in the region began to climb, Cowan realized it made more sense to bring members of the BMT team to the Four Corners. Additional experts like Cropp are asked to come along to advise on the special vulnerabilities of SCIDA children. Though financial support has been meager in a floundering economy, Cowan is determined to continue the visits.

Each of the children's exams is part medical consultation, part reunion. The children say "aaaah" for Cowan as he looks down throats and checks teeth, listens to lungs and taps for reflexes. Abramovitz takes medical histories and reinforces the strategies the parents have learned to prevent infection and to manage the catheters implanted in some of the children's chests. Magary helps parents talk about ways to cope with difficulties in school or at home.

To get a reading on how well a preschooler's lungs work after exercise, Magary and Cropp join the little girl in a warm-up bunny hop up and down the hall. Abramovitz takes photos of patients and siblings and parents, and hands out copies of last year's pictures. Everyone exclaims about how the children have grown.

While the children listen or play with the exam room scale and the stethoscope, Hu, Cowan and the UCSF team consult with the parents: Has the child been eating well? How many times have they had to go to the hospital this year? Have they gotten used to taking care of the port-a-cath? How is school going?

Each child has an individual course. Some have not grown permanent teeth or are shorter than their classmates in height. Some have asthma or allergies. Most are still more susceptible to infections than other children. Their engrafted bone marrow makes abundant T lymphocytes, but they must reinforce their B lymphocytes with infusions of gamma globulin once every three weeks -- thus some need the catheter, a direct conduit to a major blood vessel.

Parents ask detailed, informed questions. The doctors discuss changes in medications and in the child's care plan. They do not have all the answers: these children are some of the first survivors of the severest form of SCID. Parents know the doctors will consult with experts from around the world.

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