What wins out: hopelessness or hope? It's a question I asked myself often during a medical mission that I went on with a team from Children's Hospital Boston's Cardiovascular program to Kumasi, Ghana, this March. It occurred to me as I looked at a waiting room filled with nearly 100 families while knowing that there would be time to operate on maybe only a dozen children with congenital heart disease that week. And it occurred to me during the first surgery when I saw a mosquito in the operating room and thought, What if they fix this child's heart defect, but he contracts malaria in the process?
It was a question that came up in ways big and small the entire time we were there: What wins out: hopelessness or hope?
The mission to Ghana is primarily organized by four people. The first three, Bev Small, RN, Christine Placidi, RN, and Judy Hurley, RN, are long-time nurses in Children's Cardiac Intensive Care Unit, and the fourth is Francis Fynn-Thompson, MD, a pediatric cardiac surgeon at Children's.
For the nurses, the mission is a continuation of efforts to bring first-world medical and surgical care to third-world countries, as all three have taken part in similar missions to other parts of the world. For Fynn-Thompson, it's an opportunity to give back to the country where he lived from age 10 until coming to the United States for college, medical school at Harvard and his surgical training at Boston hospitals.
Funded by the Variety Children's Lifeline, the mission involves two trips per year for the next five to seven years to the Komfo Anokye Teaching Hospital (KATH) in Kumasi, Ghana's second largest city. The short-term goal is for the Children's team—which includes more than 20 additional doctors, nurses, medical support staff and volunteers—to evaluate children and operate on those who they feel will benefit the most. But the long-term goal is to train their Ghanaian colleagues to eventually take over the care of these children and help them develop a pediatric cardiac surgery center that would serve patients from all over West Africa.
KATH is a good fit for a program like this because, despite the fact that it has more than 700 beds, an on-site nursing school, operating rooms (OR) and intensive care units (ICU), it doesn't offer any heart surgery. This means that when the Children's team arrived for their first trip in October 2007, they brought with them literally everything they would need to care for their patients, and that they have to set up and break down the OR and ICU each time they're there.
The need for this sort of program is huge. If the rates of congenital heart disease found in the United States (about one in 100) hold true in Ghana, that means that as many as 90,000 of the country's roughly nine million children under the age of 14 have a congenital heart defect. And that doesn't include the rest of West Africa, whose countries are in generally the same boat as Ghana from a medical/surgical perspective.
Yet there are only two pediatric cardiologists in the entire country (which is roughly the size of Oregon) and not a single pediatric cardiac surgeon. Contrast that with Children's, where there are 55 full-time pediatric cardiologists and six pediatric cardiac surgeons.
To make matters more complicated, even though each trip is about 10 days long, when you factor in time for travel, clinic, set-up and break-down, there are actually only five days available for surgery. Fynn-Thompson is the only surgeon who goes on the mission and there's only one OR available, which means that there can be only two cases per day—three if they're easy fixes that don't require the patient to be put on the heart-lung bypass machine.
That's a maximum of 15 surgeries per trip. But it hasn't been that many yet (eight on the first trip and 11 the second), and likely won't be unless they can find a way to either do more surgeries per day or add more OR days.
So how do you choose who gets to have surgery?
The decision-making process began early during the trip in March. Clinic started at around 8 in the morning, and during the lunch break, at around 2 p.m., the entire clinical team gathered for an hour to begin discussing which patients should be operated on that week. Patients' charts were put in piles, one each for children who were good candidates for surgery, higher-risk candidates or children about whom more discussion was needed. The team gathered again, this time after dinner back at the hotel where we were staying, to continue the discussion and finalize the schedule for the first day of surgery, which would start the next morning.
Their task was made harder by the fact that twice as many patients had shown up to be evaluated as had come last October. Imagine a room filled with 100 children, their parents' faces hopeful and excited, then pick the 11 who will have surgery and tell the other 89 that they won't have an operation this time, and may not have one at all.
"Making the decisions about who would get surgery and who wouldn't was much harder this time than it was last time," says Fynn-Thompson.
Last fall, things were a little more cut and dried. The members of Children's team were trying to get their feet under them in a situation with a lot of unknowns, so they chose relatively simple cases that would allow them to predict with confidence which children would do well during and after surgery. They repaired simpler things like atrial septal defects and patent ductus arteriosus and their plan worked well: All eight of the children had gone home by the time the Children's team left Ghana.
"We have to decide who will benefit the most," says Small of the decision-making process she and the rest of the members of the team go through. "If we had done sicker kids, it would have taken up ICU space and we wouldn't have been able to operate on as many children."
But when you're faced with so many children in need and are used to operating on the sickest of the sick, it's hard to accept that children you would operate on with relative ease here in the States should be allowed to die. So with the positive experience of the first trip behind them, the team decided that, with careful consideration, they could take on more challenging cases this time around.
Their most challenging case was that of a 12-year-old girl named Jessica. The team would never see a patient like her here in the United States, and she wouldn't even have been considered as a surgical candidate during the team's first trip. She was born with tetralogy of Fallot (teh-TRALL-o-gee of fal-O), a not-uncommon congenital heart condition that causes there to be a lack of oxygen in the blood. This, in turn, leads to a blue tint to the child's skin and lethargy as the body grows tired from functioning without enough oxygen.
Left untreated, tetralogy of Fallot is fatal. But in the United States, it's often diagnosed shortly after birth and surgically repaired in infancy with very good results; children who have surgery when they're babies are generally expected to live healthy and active lives.
But Jessica is almost a teenager. That means two things: One, she's incredibly strong to have survived this long, and two, her body has dealt with a lack of oxygen for a dozen years, so is fatigued and weakened. The Children's doctors and nurses considered these two facts, along with the detailed medical information they gathered about her during clinic, before deciding that Jessica would fill one of the precious surgical spots.
As expected, her surgery went very smoothly, and, like the six children who had surgery before her that week—including another child with tetralogy of Fallot—she was taken off the breathing machine within hours of the end of her operation. But it wasn't long before her oxygen saturation levels (a measure of how much oxygen is in the blood) began to drop and her condition deteriorated. Fynn-Thompson, Small and Ravi Thiagarajan, MD, an intensive care doctor, rushed to the hospital to help the nurses who were caring for Jessica put her back on the ventilator.
Thiagarajan, Mark Scheurer, MD, another intensive care doctor, and ICU nurses Mary Eisenhaur, RN, and Karen Hinsley, RN, stayed at Jessica's bedside the entire night, watching her vitals and looking for signs that she was rebounding. But she was slow to show real improvement.
"I work in the intensive care environment every day, so I don't get intimidated in critical care situations," Thiagarajan said the next day. "But I was intimidated last night."
It's not that Jessica, a 6th grader with a gentle smile and three older sisters, was sicker than children he has cared for here in the United States. It was that the problems were occurring on Thursday and the team was scheduled to leave Ghana on Monday. There was little time for Jessica to recover enough for the Ghanaian clinicians to take over her care. Discussions began about who would stay behind to care for Jessica when the team left Kumasi.
Friday was the team's last day at the hospital, so was spent packing up the OR and ICU and preparing for the farewell party that afternoon with the patients and their families. Jessica, who had been taken off the ventilator earlier that day, asked to be wheeled from the ICU up to the pediatric floor for the party. She looked exhausted, but was getting better.
Based on her improvement, and growing confidence in the Ghanaian doctors, it was decided that Jessica was well enough that the entire Children's team could leave together. Her care was left to Isaac Okyere, MD, a surgical resident from Ghana's capital city of Accra who is training under Fynn-Thompson with the goal of one day taking over the program. He contacted the team before we left Ghana and let us know that Jessica was recovering well and would soon be heading home from the hospital.
"The situation with Jessica reminded us that we have to be very careful how we choose the kids we operate on," says Fynn-Thompson. "When we were setting up this mission, the Ghanaian physicians made it clear that they didn't want us to leave any children behind who they wouldn't be able to care for. We want to help as many patients as we can, but we don't want to be a burden to the local physicians and don't want to leave these children in worse conditions than when we got there."
So we come back to the question we started with at the beginning: What wins out: hopelessness or hope?
One hundred children were evaluated during the trip and 11 had surgery. You can insert the word "only" in front of "11" if that suits you, or you can change "surgery" to "their lives saved."
Hopelessness or hope? I guess it's all how you choose to look at it.
Nurse Bev Small, for one, has no doubt about the answer. "If we had been going there for 10 years and there was no progress, we'd have no hope," she says. "But the willingness to learn [on the part of the Ghanaians] is tremendous. And there's hope on everyone's faces—staff, parents and children. There will always be new challenges, but the motivation and excitement are still there. I'm ready to go again."