This story was originally published on the Nepali Times on August 5, 2023. By Yugeshwor Koirala.
Pritam Kunwar was born with a cleft lip and palate in Pokhara, but his family could not afford treatment for his condition. His face was disfigured, his speech was unintelligible, and the food he ate would often get into his nasal cavity.
Finally, at 15 he received cleft surgery, but without post-operative therapy his speech was still impaired. Then one day, at age 26, his life changed.
He used to make a living rowing boats at Phewa Lake, where a foreigner hopped on for a ride. He turned out to be a plastic surgeon volunteering in Nepal who referred him to Fishtail Hospital. That is where he met Shankar Man Rai.
Kunwar underwent a second surgery, and received speech therapy. Today, he holds a Taekwondo black belt, and runs an academy by Pokhara’s Lakeside, training young women in self-defence.
“Before my second surgery, the students at my martial arts academy did not understand a word I said, but after I could speak properly they learnt faster,” recalls Kunwar.
Read also: Learning Self Love: Pritam’s Story, ReSurge International
On average, one out of every 500 live births in Nepal is a case of cleft lip or palate, birth deformities in which the lip or palate fail to fuse. Incidence in Nepal is higher than in most parts of the world for reasons which are unclear, but may have to do with a combination of genetic and environmental factors.
However, the numbers afflicted are going down due to awareness and treatment at the Nepal Cleft and Burn Center at Kirtipur overlooking Kathmandu.
“Before the 1980s, cleft and burn treatment through plastic surgery was unheard of in the country,” explains Shankar Man Rai, who is now a plastic surgeon and director of the Kirtipur centre. “International volunteer teams carried out the procedures, while Nepali doctors remained under-equipped.”
Since then, Rai’s team has seen that scenario change. Improved awareness of the condition means parents bring their children for treatment to the 30-bed Centre almost as soon as they are born.
Nepali paediatric and general surgeons were trained by the international teams, and for over 25 years Rai’s team has been treating thousands of burn and cleft patients free of cost. The facility is funded by two non-profits, ReSurge International and Smile Train.
The facility at Kirtipur was inaugurated in 2014, but the Cleft and Burn Center was initiated in 2002 by American textile retailer Jim Webber after meeting Rai in Nepal. Webber ran the Tibet Rug company, and organised financial support from other rug importers from Nepal to help fund the project.
Since then, the Center has been Nepal’s first and leading teaching hospital specialising in deformity-correction surgery. Today, it is being run by Kirtipur Municipality and the non-profit Public Health Concern Trust Nepal (phect-NEPAL), providing free treatment not just to patients at the centre but through camps in remote parts of the country.
Kiran Nakarmi is the head of the Department of Burns, Plastic and Reconstructive Surgery at Kirtipur Hospital who worked with Rai to set up the centre. He says a cleft lip is easily recognised in infants, and can now even be diagnosed via ultrasound before birth.
“Timely treatment is important because it yields better speech outcomes,” Nakarmi explains. “Our focus is on comprehensive care. Surgery alone is not enough, it needs follow-up with speech and occupational therapy and counseling.”
The Kirtipur center’s camps have reached many rural parts of Nepal, impacting more than 20,000 cleft patients. Initially, speech therapists used to go to the camps but now has trained nurses like Kabita Bhattarai Gurung to carry out the same task.
The outreach camps provide free food, lodging, orthodontic treatment, parental counseling, and speech therapy to patients, a model which Rai says can be replicated globally.
The caseload for cleft palates has fallen sharply and the Kiritpur center which used to carry out up to 1,200 cleft operations a year till a decade ago now performs half that.
Read More: Nepal’s Speech Therapy Camps, ReSurge International
Burning need
But with the decline in cleft cases, there has been a growing need to treat burn patients at Kirtipur.
Bhesh, 14, was playing in his home in western Nepal when he heard his mother shriek from the kitchen. She was cooking when the open fire spread and engulfed the house.
Four days later, both Bhesh and his mother arrived at Nepal Cleft and Burn Center. The long ride had been excruciating, and with burns over 30% of her body, his mother died shortly after. Bhesh went through several surgeries and skin grafts. Over a third of the patients admitted to the Centre are children, and half are women.
“We think that the home is the safest place, but that is where most burn injuries occur,” says Rai. “The proportion of children with burns at the Center shot up to over 40% during the pandemic. At home they were more at risk.”
Rural women are exposed to open fires, and children suffer because they are largely unsupervised in high-hazard settings. Disfigured burn patients have to deal with social stigma because they are seen as a sign of bad luck.
Read Also: Aastha’s Story, ReSurge International
The Center also treats burn violence usually perpetrated against women in the homes of in-laws, and this adds to the count of the 110 people who die of burns each year in Nepal.
“Burns survivors in Nepal need more support,” says Wendy Marston, co-founder and advisor of Burns Violence Survivors (BVS) Nepal. “Small acts of kindness from all of us, such as the spreading of education, and charitable giving, can go far in helping these survivors and patients.”
BVS Nepal works with underserved patients in over 12 hospitals, providing funds for their treatment, therapy, and setting up businesses for survivors. Its prevention approach is shared by the Burn and Cleft Center which also holds burn awareness camps for community health workers and local people.
“For household burns, awareness is surely the first step towards prevention,” Rai says. “But we can’t simply tell people what to do if they don’t have the means to act.”
A WHO study shows that burns are the second most common injury in rural Nepal, accounting for 5% of disabilities in the country,
Read Also: The Searing Disparity Between Burn Patients, A Hidden Gender Equity Issue, Think Global Health
“When we first started treating burns, we began with disabilities caused by post-burn contractures,” explains Nakarmi. “If the wound is in a place such as a joint, this causes the patient to lose mobility.”
The Kirtipur team prioritises comprehensive care for burn contractures. But unlike with cleft palates, they failed to see any decline in the caseload even after years of effort. Rai says this is because burn survivors are not getting the treatment needed. Surgeons hope that using flaps and grafts they can reduce the occurrence of contractures.
Nepal’s difficult geography keeps patients like Bhesh from quickly receiving care. Burn survivors from all over the country are referred to the few specialised centres in Kathmandu, but there is usually a long waiting list and it takes weeks before a doctor can see them.
The Kirtipur Center has largely succeeded in minimising waits by enabling surgeons to go to patients instead of the other way around. This means patients at the Center receive the surgery they need within days of being admitted.
But there are challenges. “Your treatment is not possible here,” were the words that Nepali Congress leader Chandra Bhandari heard at the Nepal Burn and Cleft Center where he was rushed there after suffering severe burn wounds in a gas cylinder explosion in February. Bhandari was eventually medevaced to Mumbai where he was successfully treated.
“It is unfair that any Nepali should have to go abroad for burn treatment,” Bhandari told Nepali Times. “Our surgeons are the best in the world, yet they have had to rely solely on individual and community effort. The government urgently needs to support the surgeons, and I pledge to do what I can.”
There are only 30-40 reconstructive plastic surgeons in the country, eight of them at Kirtipur, which offers a residency program for reconstructive plastic surgery affiliated with the National Academy of Medical Sciences program at Bir Hospital, whose curriculum was developed by Rai.
While cosmetic plastic surgery is a booming profession in Nepal, the niche dedicated to burns treatment has not got the attention it deserves. Kirtipur Hospital, for instance, only has seven ICU beds, The country’s only skin bank at the Center has got only 31 donations in the nine years since it was set up.
Read Also: 5 Things We Learned from Dr. Shankar Man Rai, ReSurge International
With little government support, the Center mostly runs on international help for free treatment to about 600 patients a year. But even as its focus shifts from clefts to burns, international assistance is skewed in favour of cleft palates.
“We get more donations than we need for clefts,” Rai reveals. “Burns are where we need greater investment, but because they are more expensive and complex, and have higher odds of ending in mortality, there is less interest from donors.”
Not only is the government not providing needed help, its bureaucracy puts up obstacles every step of the way. Kirtipur Municipality received a donation of Rs2,900,000 for urgent burn treatment supplies. But red tape has delayed delivery.
The Center now has an ambitious plan to establish a sustainable fund for free burns treatment by encouraging donations from well-to-do local Nepalis and the diaspora. The goal is not to have to turn to international donors for money.
The Nepal Cleft and Burn Center will soon open a branch in Itahari of Sunsari district with the same level of care as Kirtipur.
Says Nakarmi: “We don’t need big, lavish burn hospitals all over the country. We need a lot more primary burn centers where rural patients can receive immediate care, and then be referred to the larger centers if need be.”
Nepal has seen major improvements in burn and cleft palate surgeries in recent years thanks to doctors like Rai and Nakarmi. Says Rai: “I am sure we will see a day when no patient seeking treatment in Nepal has to live with scars, both figuratively, and literally.”
