UYO, AKWA IBOM: Daily, Gift Udoma urinated frequently and experienced extreme hunger, thirst, and fatigue. She also had blurred vision. As her doctor later confirmed, these symptoms meant she had uncontrolled diabetes, the disease that causes high blood sugar.
As a result, just one week after she gave birth to AbleGod in October 2012, the child was diagnosed with congenital heart disease or CHD, an abnormality in the heart present at birth.
“At first, no one seemed to know what was wrong with my son,” she said. “But we later discovered at the [University of Uyo] Teaching Hospital (where he was born] that it was [a] heart disease.”
CHD occurs due to a disruption in the development of the heart’s structure during the first six weeks of pregnancy.
Researchers are not exactly sure what causes the disruption. But Chris Yilgwan, a pediatric cardiologist at the Jos University Teaching Hospital or JUTH in Plateau State, said conditions like uncontrolled maternal diabetes (like Udoma’s case), rubella (a viral infection), and genetic problems in pregnant women could increase the risk of CHD.
CHD can affect any of the heart’s vital components, including the valve, walls, or blood vessels. But irrespective of the part involved, its presence makes it difficult for the heart to pump and distribute sufficient blood to other parts of the body. Severe but untreated CHD could lead to blood clotting, heart failure, or even death.
There are about 12 million cases worldwide, constituting nearly one-third of all congenital anomalies (conditions present at birth). At least 261,247 children with CHD die every year.
In Nigeria, 70 000 or one percent of the 7million children born annually are born with CHD. The death rate has increased since the last 18 years – from 0.03% in 2006 to 0.05% in 2017.
“God just had mercy on me”
AbleGod’s condition was a complex type called “tetralogy of Fallot” – a combination of four heart defects that turned his tongue and lips blue due to poor oxygen circulation resulting from insufficient blood flow.
Because UUTH, like most Nigerian tertiary healthcare facilities, lacked the needed equipment (like heart-lung machines and ventilators) and skilled professionals (like intensivists, anesthetics, pediatrics cardiologists, and surgeons) to operate on him, doctors recommended flying AbleGod to India for surgery. But his single mother, a small poultry farmer, could not afford the N5 million (over $12,000) quoted, so AbleGod grappled with the condition for nearly seven years.
“My son found it difficult to walk. He struggled to eat, and he was always weak,” Udoma said, adding that he dropped out of school just two years after enrolment in 2016.
However, help came in April 2019 when Udoma received a text message from a nurse at the UUTH informing her that doctors from a nonprofit had arrived at UUTH to screen children with CHD for free surgeries. Udoma rushed to the hospital almost immediately with AbleGod, who was screened with other children.
A month later, she received a phone call from Hospitals for Humanity or HfH – the nonprofit whose volunteer doctors were conducting the screening. AbleGod had been considered for the surgery, she was told.
“I became strong after the call,” Udoma said. “Many people had said negative things about my son. Some even said he wouldn’t survive. So the call was my saving grace; God had mercy on me.”
But the doctors could not conduct a proper surgery on him because they soon discovered his condition required a more technical surgery that the nonprofit’s doctors were not equipped to perform in Nigeria, said Queennette Daniels, a board member at HrH. HfH then concluded to fly him to the US for corrective surgery.
However, it would take weeks or months before the logistics and documents needed for such travel were prepared. So since the doctors feared he could die within months, to save his life, they performed a procedure called “shunting” (a temporary treatment that enables oxygen-carrying blood to bypass the lungs to the body) on him.
“We needed to do a palliative procedure, connecting a big blood vessel to one of the chambers of the heart, shunting the blood to keep the child going for the meantime until a corrective surgery,” Daniels, who is also a pediatric cardiologist at the Federal Medical Center in Keffi, Nasarawa State, said. “That is what is keeping the child alive…and should carry him for about six to seven years.”
The procedure has helped AbleGod resume a normal life, including returning to school.
“Today, he plays around and moves freely without anyone holding his hands,” Udoma confirmed.
HfH was still finalizing arrangements to fly AbleGod for a corrective surgery before COVID-19 came with travel restrictions and lockdowns.
Underfunded healthcare system
Nigeria’s healthcare sector has suffered underfunding for decades leading to a poor healthcare system with poor working conditions and inadequate facilities and equipment to handle complex issues like open-heart surgeries.
About 50% of Nigerian-trained doctors have either left the country to practice abroad or abandoned the medical practice.
Most times, Nigerians requiring heart surgeries are referred to countries like the US, UK, and India, where heart surgery costs between N3.1 million ($7.5) and N36.9 million ($90).
With nearly 41% of Nigerians living in extreme poverty, only a tiny percentage of the population can afford treatment abroad.
‘I don’t believe a child should die’
In early 2000, Segun Ajayi returned from the US to Nigeria’s commercial city of Lagos for a visit. Weeks after, he went down with diarrhea and was admitted to a hospital in Lagos.
But, Ajayi, who was 19 years old and a medical student in the US, was disappointed that the health facility was poorly fitted with equipment and personnel for quality service.
“When I walked into the hospital, it was supposed to be the best, but it was no match with the poorest hospital in the US if we compare,” the Nigerian said. “It disheartened me because Nigeria [should have] a better story to tell.”
Ajayi then decided he would contribute to improving healthcare delivery in Nigeria and other underserved countries. That promise came to fruition in 2010 when he founded HfH to provide emergency healthcare response to people affected by natural disasters, starting with the Haiti earthquake of January 2010 and later the Philippines’ 2013 Super Typhoon Haiyan.
In Nigeria, where US-based HfH has a branch in Abuja, in 2014, it decided to focus on providing free pediatric open-heart surgeries and cardiac catheterization (inserting a small tube through the loins or arm and guiding it up to the blood vessels as part of diagnosis and treatment).
Its Pediatric Open-heart Initiative works with Nigerian tertiary hospitals (including Garki General Hospital, Abuja; JUTH, Plateau; Ibom Specialist Hospital and University of Uyo Teaching Hospital; Akwa Ibom State) to screen and treat children with CHD
HfH performs the surgeries using its foreign volunteer surgeons (alongside supporting experts like intensivists, anesthetists, pediatric cardiologists, nurses, and others) from several countries, including the US, UK, and India.
HfH and the volunteers provide equipment for the operation, which could occur in any of its partnering hospitals.
“Sometimes, we could have a whole team of almost 20 people from different countries coming,” Daniels said.
HfH has treated 81 children with CHD and screened 1500 since 2014, mainly relying on grants and corporate donations. For very complex conditions like AbleGod’s, it flies the child to a country where the case can best be handled.
Until late 2019 when COVID-19 disrupted its activities, the week-long surgeries in Nigeria were conducted twice yearly.
“The end-game is to have free 100% surgery for every child that comes into the hospital,” Ajayi explained. “I don’t believe a child should die because of difficult surgery, lack of resources or skill.”
But relying only on foreign volunteer doctors would not deliver that “100%” expected outcome, so HfH attaches local doctors to their foreign counterparts so they could learn and eventually take over.
“The (foreign) nurses teach the (local) nurses, the doctors teach the doctors, and so on,” Daniels explained, adding that through this process, 10 local surgeons have been trained. Some of them now perform the surgeries, including at the Garki General Hospital in Abuja.
However, HfH has not carried out any surgeries since 2019, when COVID-19 lockdowns and restrictions forced it to suspend in-person activities. And now that most of its volunteer doctors have been vaccinated against COVID-19, Nigeria’s worsening security situation has continued to make it difficult for the nonprofit to resume.
“The kidnapping issue (in Nigeria) is not making it easy. The US Embassy (for example) is finding it difficult to release their people. What they keep telling them is that they would kidnap them,” Daniels said.
She prays that things improve soon so that HfH can resume complete activities, including flying AbleGod, whom she said is “one of our priorities when we resume.”
In the meantime, the nine-year-old boy is doing pretty well and now has a big dream: “I want to become a doctor so that I can help others.”