The mission had been fairly routine before the little girl came in the room. Once she arrived, it was impossible to determine just how bad it had gotten.
Her family was indigenous Maya. The father spoke some English and was wearing western clothing when he said that he had just returned from the US. The mother, in her colorful huipil and hand loomed skirt, held the little girl close to her heart with and spoke with both trepidation and hope.
The energetic polka-dotted bow in her hair belied her state as the child lethargically lifted her head. She was staring through us with yellow eyes and a gaze that is unforgettable to those who have seen a truly ill child.
She is quite sick.
Knowing that we lacked the tools to diagnose her, we were determined to treat whatever we could.
Perhaps she had been struck with malaria, but the P. vivax malaria seen most frequently in Guatemala is uncommon at this altitude.
Plus, she had a litany of complaints that didn’t make sense to that diagnosis alone.
The parents reported that the little girl had a poor appetite with daily vomiting for a year. They also mentioned that her abdomen was distended, but that could be caused by many things such as kwashiorkor-the severe protein malnutrition that many impoverished children suffer, severe intestinal parasites, or even liver failure.
The mother quickly lifted the little girl’s shirt up so that we could see her abdomen. Almost involuntarily, I heard the words “liver failure” leave my mouth and drop through the air like a lead balloon.
I had seen it many times before in alcoholics. The taught abdomen with engorged veins is unmistakable and ominous, but I had never seen it in a child before.
Thinking that intestinal parasites might be the only thing that I could treat, I went to look for a proper dose of albendazole for the child. The family stayed in the room with a student provider, interpreter, and some other concerned volunteers.
When working in other cultures, sometimes prior health information and diagnosis aren’t immediately offered up, perhaps out of suspicion of the original diagnosis or in an effort to see if we would be willing to do anything different.
By the time that I returned with albenazole, the parents had produced a stack of paperwork confirming our worst suspicions.
The child had liver cysts and masses of unknown etiology that had caused hepatomegaly and bile duct compression. The illness had been diagnosed six months before and the patient had been referred to a specialty hospital for immediate surgery. She had not gone.
I quickly scrapped the albendazole because I knew now that there is no way that her liver was healthy enough to metabolize the medication, and besides, even if she had parasites, worms are the least of her concerns.
In the time since her diagnosis, the girl had certainly worsened and we were now concerned that she would need a transplant to survive.
There were so many questions that would go unanswered.
Why had the little girl not been taken in for surgery? Perhaps it was money, maybe it was inability to travel due to the father being out of the country, or possibly even a lack of trust in the medical services in Guatemala for the indigenous population. It was not unheard of for the Mayan population to experience profound discrimination and very poor care due in the country.
Whatever the reasons, the delay in treatment is likely to have devastating consequences for the little child.
Rather rapidly, the situation was explained with as much delicacy as possible that our organization would be unable to provide care and that they must go as soon as possible to the hospital that was to provide surgery.
The mother appeared angry. Possibly she felt that this was another discriminatory sleight – us refusing to treat because they were Mayan – when it was anything but that. This is a highly specialized procedure and we wanted the little girl to get help as soon as possible.
Sadly, that will not change the mother’s perception of what she was experiencing. And who can blame her? In a world where discrimination is common, it is easy to understand her feelings, but a tough pill to swallow when our intentions are to care for all.
The father took directions to the surgical center, the child was quickly dressed, polka-dotted bow in place, and they were gone.
I was leveled with the knowledge that we could do nothing and that the little girl is likely past the point of no return.
The blow hit us hard and at different times. I went about my day with the knowledge that there were other patients to see and help, but I cried an ocean that night while alone in my room.
But for the grace of birthplace, that could have been my child. It could be any of us.
By all accounts, it was a successful mission. 864 patients went home with medicine, dental care, or a surgery that they needed. Our days were filled with treating many patients that we were able to help, but there always seems to be one for whom happy endings of a heroic mission do not apply.
And that simply means that there is more work to be done.