"Another way": Trying to breathe in South Sudan

Searching for a way to save a young boy's life, US doctor Hayes comes to terms with the sometimes unforgiving reality of working in humanitarian healthcare

“How will we discharge him if he needs oxygen?”

This was the question that concluded our morning rounds each day in the inpatient therapeutic feeding centre.

The patient was Isaac B (not his real name). The three-month-old boy I met in Bed 16.

He was originally admitted to the MSF hospital at the UN “Protection of Civilians” camp (or PoC) in Bentiu over six weeks ago, suffering from severe acute malnutrition and pneumonia. At that time, he was dangerously thin and had extremely low oxygen levels from the infection, causing significant respiratory distress.

I suspected he had an atrial septal defect – a hole between the two top chambers of the heart

Over the last few weeks, his health had gradually improved. Thanks to the coordination of the medical team, nurses and nutritional staff his pneumonia cleared-up and his nutritional status returned to normal.

He was starting to look like a healthy three-month-old. And, I daresay, mildly chubby.

The problem

The only problem was that despite all of this, we could not wean him off oxygen. Each time we tried, he developed worsening respiratory distress.

When we examined him, his lungs were clear and normal – but he had a very loud heart murmur.

After performing an ultrasound of his heart, I suspected he had an atrial septal defect – a hole between the two top chambers of the heart. This was making it difficult for his heart to pump oxygenated blood to the rest of his body.

Searching for a surgeon

Our diagnostic capabilities are rather limited here, but even still, we didn’t have a paediatric cardiac surgeon who could potentially fix his heart.

After doing some research online and talking with colleagues, I found a cardiac surgery centre that partners with an international organisation in Khartoum, Sudan, which was a 13-hour drive from us.

They provided paediatric cardiac surgeries at no cost to families.

Overjoyed and optimistic, I presented the idea of sending Isaac B to the centre to both his mother and our team who were equally enthusiastic. Still, the biggest obstacle would be in finding transportation and a portable oxygen device.

I try to find solace in knowing that we provide the highest quality of care that is within our capacity

Unfortunately, after getting in contact with the surgery centre, I discovered that there would be no paediatric team available for another six months.

I was crestfallen, and the disappointment from Isaac B’s mother was palpable.

“That is too long to wait,” she said.

After being admitted for six weeks in the hospital, she insisted upon taking him home, saying she would “find another way”.

Another way

We care for hundreds of malnourished children every year in our hospital.

In this region of South Sudan, there has been fighting and conflict for almost the last two decades. This has led to extreme food insecurity and widespread malnutrition, particularly for children under the age of five. However, with the right therapy, most of the children can recover over the course of several weeks.

We had prolonged Isaac B’s life by giving him the oxygen and treatment he needed to overcome his pneumonia and malnutrition…  but to what end? The underlying problem, his congenital heart defect, was too big for us to fix.

When you work in a field hospital in South Sudan, there are real limitations to what you can do as healthcare providers. We face these challenges head-on as best we can, even though it can be extremely frustrating and at times disappointing.

For me, I try to find solace in knowing that we provide the highest quality of care that is within our capacity.

I’ll probably never know what happened to Isaac B, but I maintain hope that his mother found “another way”.


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* Header image from Bentiu PoC, but not of "Isaac B"