Holding Out Hope

In my twelve years as an American family doctor working in low-resource countries in the Middle East, I’ve seen and treated countless patients with little to no hope for improvement in their physical and emotional problems. Seeing patients in these circumstances is emotionally exhausting, but the importance of my role in supporting these patients continues to draw me back in.

Reflecting on the challenges they face, I often think of one in particular: a baby named Hiba.

Hiba’s mother, Layla, had received very little prenatal care during her pregnancy, as is common among poor, rural patients in low-income countries. She’d suffered from several prenatal complications, and Hiba was born via an emergency cesarean section.

Hiba’s condition was precarious. She was diagnosed with mild spina bifida, imperforate anus and several missing ribs. Her blood-oxygen level was dangerously low, in the 70s, and her temperature hovered around 95° F.

Despite her frailty, our medical team felt that, given the proper level of intensive specialized care, she had a reasonable chance of survival.

As a physician, I often feel helpless, seeing my patients’ sea of unmet needs and knowing that I cannot help everyone. But Hiba was not “everyone.” She was a baby right in front of me, and I felt we shouldn’t—couldn’t—let her die without a fight.

I went to Layla and her husband, Ahmad, hoping that they would share my sense of urgency.

“Hiba’s situation is indeed serious, but she might survive if she receives the proper treatment at a specialized hospital,” I told them.

To my dismay, Layla and Ahmad saw no chance that their tiny, frail newborn daughter would improve. Convinced that her death was inevitable, they decided to take her home. Horrified and confused by their seeming callousness, I tried to convince them to stay.

“Doctor, thank you, we understand, but we have no money,” came their simple reply.

Ahmed was a day laborer, taking whatever jobs he could get to make ends meet, while Layla’s mom stayed at home with her other kids. Although they were visibly upset by Hiba’s condition, they clearly didn’t see medical treatment as an option.

Seeing their pain at their daughter’s fragile health, and the deep poverty that kept the cost of her treatment out of reach, I felt my horror melt into compassion. Caught between my desire to help and my wish not to impose my own attitudes on Hiba’s parents, I struggled to know what to do.

After speaking to several hospital administrators, I returned excitedly to Hiba’s parents.

“I’ve secured approval for Hiba to stay here free of charge until she can be transferred to a low-cost university hospital for a higher level of care,” I told them.

Again, they responded with appreciation—and again they reiterated, “Thank you so much, doctor. But we still can’t afford her care at the university hospital, even if the cost is low.”

I told them that I would look for other solutions to the funding problem. While I was doing so, though, Hiba’s parents left the hospital.

I assumed that Hiba would quickly die without her supplemental oxygen and incubator—but, to my surprise, she did not.

Over the next few days, I telephoned the family repeatedly, trying to persuade them to bring Hiba back. After a few days, they finally agreed to return.

I was shocked to see that Hiba was breastfeeding and had gained weight, and that her vital signs were somewhat stable.

Despite not having the funding completely in place, I told Ahmed and Layla, “We will find money to pay for any treatment Hiba needs at the university hospital. Please take her there.”

This time, they agreed.

When they finally set out for the hospital—a four-hour trip—I heaved a sigh of relief, thinking, At last Hiba will get the specialized care she needs to have a chance of surviving.

I called her parents the next day, only to learn that they’d encountered another stumbling block: Upon arriving at the university hospital, they’d been told that there were no available beds. They were put on a waiting list, which was expected to take a few days.

I immediately directed them to go to a nearby private hospital. They agreed to take her to the next day.

But that night, Hiba died at home. She was six days old.

Upon hearing the news, I felt completely defeated—and heartbroken. After securing the funding for Hiba’s care and setting up what I believed was a reasonable plan, I thought I’d covered all the bases.

Upon further reflection, though, I realized that I’d failed to surmount one enormous barrier: lack of hope.

I reflected on the shocking contrast between my parents’ hopes for me at birth and Hiba’s parents’ lack of hope for her. As much as they loved their infant daughter, the combination of their extreme poverty and their environment, a low-resource region without a strong social safety net, had stolen their hope for her recovery.

As a primary-care physician in a low-resource country, I’ve learned that “hope-giving” needs to be one of my main roles. Without hope, patients will not take their medicines, return for appointments or change their lifestyles. Hope doesn’t always lead to the “hoped for” goal. Hope doesn’t make a cancer disappear or an infection magically improve—but hope does lead people to try.

Honestly, I don’t know what would have happened if Hiba had made it to the university hospital, but at least she could have been fully evaluated; specialists could have discussed the possible interventions, and her parents could have made an informed decision. At least she could have had a chance.

When we try, there is at least a possibility that things might get better—and possibility is a powerful thing.