Have you ever seen an adult with a cleft lip? Probably not, if you live in the US or in another developed country.
Cleft lip is a deformity that most Americans typically only see in photographs of children from less developed countries, most often in Latin America, Asia or Africa.
Cleft lips occur at a rate of about one in 1,000 in Caucasian newborns. That’s almost twice as often as they occur in African newborns in some places, where the rate is one in 3,300 newborns born with cleft lips.
We don’t see adults with cleft lips in the US—or even babies, for the most part—because the condition is usually fixed within a child’s first six months of life.
While it appears that more kids have more diseases in low-income countries in Africa and Asia, there are actually just more resources being spent on curing them earlier on in higher-income countries.
This plays into the fact that general public has a fairly limited understanding of surgical pediatric issues globally, or just how dire the situation really is. There are numerous conditions that affect millions of children, yet research and attention tends to cluster around adult diseases. Additionally, because many medical centers that do have resources still use the mission trip model to provide care to underserved communities, we are supplementing this shortage, but not necessarily thinking of sustainable solutions.
Sad as this may be, it’s most likely unsurprising to a lot of readers. But with international organizations ramping up funding and awareness campaigns, it’s still shocking that of the roughly 2,300 pediatric neurosurgeons practicing around the world, a little more than 85% practiced in high- and middle-income countries. In lower-income countries, there are around 330 pediatric neurosurgeons caring for 1.2 billion children.
In the lowest-income countries in Africa, there is roughly one pediatric neurosurgeon for a population of 30 million children.
Worldwide, 1.7 billion children and adolescents do not have access to basic life-saving surgery. More than 65% of these children live in low- and middle-income countries. In low income countries, only 3% of kids have access to surgical care.
Again, these statistics aren’t necessarily news, just like the inequality of global wealth distribution itself is not news. But it is something that we urgently need to change.
As a pediatric plastic surgeon and a neurosurgeon in training, we have each worked at several children’s hospitals, where we have witnessed the generosity that the US system rightfully extends to children in need: We have emergency and comprehensive Medicaid, patient advocates, social workers, free or subsidized medical equipment, education programs, lodging for families who live far from a hospital to temporarily live nearby while a child is sick, and more.
In 2014, 82% of Americans reportedly lived within 60 minutes of a major trauma center providing most subspecialty surgeries. A survey of 475 families in North Carolina that had a child with a cleft lip showed that the average family travelled 90 minutes to reach a specialty surgery center capable of providing cleft lip surgery.
In Vietnam, a survey of 450 families found that the average family travelled over 5 hours to reach a hospital for cleft lip care.
Of course, children in the US suffer where the medical system fails them, especially in marginalized communities. But international context for the need for pediatric surgical care is important. For children, this disparity is often the difference between life and death.
While substantial amounts of funding was recently put toward measuring the global burden of surgical disease, pediatric diseases were largely left out of these projects.
Incidents like this reinforce a dangerous assumption that children are simply small adults. For example, in order to operate on children in the U.S., fully trained surgeons and anesthesiologists who are licensed to operate on adults must complete one or two extra years of pediatric specialty training. We cannot afford to lose as much blood when operating on a child because they have much smaller reserves. Children have higher oxygen requirements and are more vulnerable to environmental exposures.
Children have unique anatomy, physiology and surgical diseases. Training used to perform adult surgery and anesthesia cannot just be applied to children on a smaller scale.
Children cannot stand up for themselves. They are vulnerable, and those who survive their diseases without an operation are often permanently disabled and risk being ostracized from society. In our careers, we have cared for children abroad who were not allowed to leave a closet or attend school because they had a cleft lip or other deformity that could have easily been fixed with surgery.
When we talk about “global health” for children, we often discuss things like malnutrition, HIV, malaria, or tuberculosis. But children are profoundly affected by more common conditions. Kids require surgery more frequently than many people realize, for things such as cleft lip and cleft palate, burns, various physical injuries, cancers, and brain deformities. Meanwhile road traffic accidents are the leading cause of death for adolescents worldwide.
Access to surgery has a huge impact on a person, and in a society. Studies indicate that pediatric procedures in low- and middle-income countries are not only cost effective, but are linked to robust and long-lasting societal benefits.
Since children are young, life-saving surgery or operations that correct a major deformity grant them many years to be productive members of a society. Curing children also eliminates the burden on families, where a caretaker would otherwise be left caring for a sick or disabled child, instead of adding social value, helping to generate wealth and boost the economy, or helping to provide education or improve policies.
We certainly need more general awareness and research for global pediatric surgery. Right now, policy changes are the surest way to improve access to surgery for children.
Some low- and middle-income countries are adopting National Surgical and Obstetric Plans (NSOAPs), a global health initiative created by government and private groups that focus on improving access to surgery.
The NSOAP uses hospital and population data to outline how to scale up surgical services under the auspices of a broader national health plan. To date, multiple countries, primarily in Africa, have signed up.
We’ve also seen some forward-thinking medical NGOs begin to transition away from medical mission models—in which doctors from usually affluent countries spend short periods of time treating patients in less affluent countries during a temporary residency or training program—to more sustainable models, where physicians work to build a communities’ local capacity for surgery and anesthesia, instead of temporarily flying it in.
But we still need more research and resources dedicated to training doctors for pediatric surgery and anesthesia in the developing world, where more children need it.
This means focusing on programs that train surgeons, anesthesiologists, nurses and researchers, and building local hospitals that are supported under the guidance of local ministries of health.
This also means creating more practical incentives in the field of surgical medicine. The College of Surgeons of East, Central and Southern Africa has trained over 650 local surgeons from Africa who pledge to serve their home villages as a condition of enrollment.
Operation Smile, which has traditionally been a mission trip-based organization, has recognized the need for strengthening health systems instead of supplementing them. In 2016 the organization committed to spending $250 million to increase surgical capacity in 40 countries. They have now supported pediatric and surgical hospitals in Nicaragua, Madagascar, Vietnam and India, and have trained pediatric surgeons and nurses in over 30 countries.
Access to surgical care is an important way to decrease these numbers, as 1.7 billion children around the world depend on it. They say it takes a village to raise a child, but those villages need to have doctors equipped to make sure they stay healthy in the first place.