Even a technologically advanced society cannot guarantee proper diagnosis and treatment of CAH. In Haiti, this situation is made worse by poverty. And if, by luck and parental care, a child with CAH survives the medical challenges, there are the social issues:

Voodoo, the version of ancestral African worship recently recognized as an official religion in Haiti, regards the ambiguous genitalia that can accompany classical CAH as an evil omen.

Mark Fulton, D.D.S., founder of the Midwestern U.S. chapter of Mission Haiti, a medical relief organization, explains: "In Haiti, when kids have ambiguous genitalia, it’s seen as evil. Such ‘undesirable’ children are treated differently. They may receive less food than other family members, or be left to succumb to adrenal crisis."

This is the story of two little girls who might well have suffered that fate, if not for the determination and bravery of a group of Mission Haiti volunteers from Anderson, Indiana. Members of this faith-based, ecumenical group based at the North Anderson Church of God have carried out regular medical missions to Saint Ard, Haiti for over a decade. One member, Debbie Alford, has been making six trips a year as part of this outreach program. "Our team stays in the country for a week at a time, traveling to two different villages each day," explains Alford. "We open up a clinic, and see anybody that comes through--a few hundred people or more a day. It’s a pretty intense week."

Alford also travels to and from Haiti to accompany children who, due to extreme medical need, qualify for a medical visa to come to the U.S. for treatment. She has come to know several Haitian families with children that have CAH. According to Alford, Haitian communities may pressure parents of such children to bring the child to a voodoo priest (a male houngan or a female mambo) or to a bokor (a shaman or sorcerer loosely linked to voodoo practice)…whether for treatment or something more sinister is not clear. While official sources deny that human sacrifice is part of Haitian voodoo rituals, others suspect that it does occur. In any case, the prospect of bringing a child before a houngan often fills their families with fear.

To obtain a medical visa to bring a critically ill child out of Haiti to the U.S., all treatment in the U.S. must be donated. Mark Fulton found a willing donor in Martin Kaefer, M.D. of Riley Hospital in Indianapolis. A pediatric urologic surgeon, Dr. Kaefer has performed reconstructive surgery on several Haitian children free of charge. The doctors, nurses, anesthesiologists, and the hospital all donate their services, as well. "It’s absolutely amazing," says Alford. "And they’re anxious to do more."

Libby was one of the lucky ones, although it hardly seemed that way when her parents brought her to the clinic at Saint Ard. She was nine months old and weighed nine pounds. "The clinic doctors didn’t know what was wrong with her. They just knew she had both male and female genitalia and was extremely malnourished," says Alford.

Back in the States, while trying to arrange a medical visa for Libby, Alford received a chilling phone call from Haiti. "Come get her now or she’s not going to be alive," she was told by a nurse at the Saint Ard orphanage where Libby was staying. Alford quickly completed the paperwork for Libby and went back to Saint Ard to pick her up. "We told her parents she might die in the U.S. because she was so sick, and they were OK with that because at least she would die comfortably." says Alford.