Decisions for the Babies of Kabul

08/24/2010 01:15 pm ET | Updated May 25, 2011

Afghanistan is a country where the absence of normal is ordinary and the presence of normal is extraordinary. The drive to CURE International Hospital tells its story -- leftover Russian jeeps plow through tornadoes of dust, U.N. trucks and Afghan policemen, equally armed, all sit at the foot of the Hindu Kush mountains. Tiny houses dot the walls of mountains encasing the city, some creeping over little cliffs just enough to tempt fate. Men in shalvar kurtas, some with beards, all looking older than their years, shuffle along. Limbs are a luxury, thanks to the plethora of landmines. Women and children roam the streets, at times dodging herds of goats crossing the ill-maintained roads. Some of the women look and dress like me. Others are walking heaps of blue, their burqas sweeping the ground while they carry their malnourished children.

Physicians have a habit of mentally diagnosing while people-watching. In the U.S. the diagnoses range from the common cold to anorexia to narcisstic personality disorder. But here, my mind can't keep up. The pathology is too profound: PTSD is the new common cold, the classic tuberculosis cough essentially serves as background elevator music for Kabul, the massive humps in spines are consistent with Pott's disease, or vertebral seeding of tuberculosis, and the sunken eyes of children and straws for legs are dead giveaways for marasmus, or frank malnutrition.

Under the faces hardened by a life full of adversity, there is a keen realization amongst Afghans that life is provisional. According to the WHO, if you are under the age of five in Afghanistan, you have a 1/5 probability of dying, which translates to a 257/1000 under-five mortality rate. For perspective, the global under-five mortality rate is 65/1000. If you are between the ages of 15 and 60, you have a 50% chance of dying. Only 15% of births in Afghanistan are attended by trained health professionals, who are mostly midwives, not doctors. For every 10,000 people, there are two -- count them, two -- physicians. This is a country that exists in relentless crisis. Approximately 60% of children under five have stunted growth and 40% are underweight. The adult literacy rate is 30% and there is 32% unemployment.

At CURE International Hospital, "fascinomas" await me. "Fascinoma" is medical slang for the rare, bizarre diseases that present intellectual challenges for us.

Last week, a one-month-old baby girl initially presented for cleft lip/cleft palate evaluation. I now suspect she has a rare genetic syndrome that leaves her with congenital heart disease (two holes in her heart), a total of twelve toes and many other deformities, including a small head. There are no resources to send the appropriate genetic tests for diagnostic confirmation. If she has the one I think she does, this genetic disorder is usually lethal within the first few weeks of life, so she has already beaten the odds.

The dilemma is whether I should recommend to the parents that they take their baby to Pakistan for further treatment, such as heart surgery and repair of cleft lip/palate. The alternative is to simply send the baby home with her parents and allow her a dignified death in her mother's arms at home. The transfer to a higher level of care in Pakistan would open an entirely new book of challenges: Will the strenuous and costly journey strip the family of precious resources that could help their five other children? What if my diagnosis is wrong and the patient has a chance at living longer? Would that make the dangerous trip to Pakistan worth pursuing?

If the baby does beat all the odds, as she has already done, what does she look forward to? High mortality rates, war, illiteracy, no access to clean water, land mines and geo-politically instability.

There is a vacancy on the face of many Afghans, one that suggests that they are just plain tired. Tired of having to go to Pakistan or Iran for their children's surgeries, tired of trekking through mined fields and mountains where they fear for their lives, and tired of having to depend on international humanitarian aid for the basic necessities of life.

For the first time in medicine, I am battling a "what's-the-point" attitude, which, inevitably leads to the evil of all evils: apathy. The patient is now decompensating, and her mother remains confused, as do we.