“Every three minutes a child is born with a cleft”

Conrad Dennis, CEO of Mission Smile, a medical charity in India, said: “Cleft is the second biggest birth defect in India. When we say “cleft lip” or “cleft palate”, it means that the child is born with a split lip, and with a non-existent or deformed palate. This means the child cannot breastfeed, cannot drink, and sometimes cannot breathe properly.

“Every three minutes, somewhere in the world, a child is born with a cleft – it’s astounding as that. And one in ten of these children will die before their first birthday. Because of the cleft palate, they suffer from malnutrition – they can’t eat or drink properly,” he explains.

According to Dennis, awareness regarding cleft palate as a treatable is still low in most parts of the country. “When you talk about visibility, or knowledge or awareness, that would be there in urban or semi-urban areas. In rural areas that don’t have access to medical care or the machinery of government, there might be children growing up with it. There is a taboo attached to this.

Dennis states that at Mission Smile they focus on a comprehensive cleft care system, which includes speech therapy, dental therapy (for dentures or extractions as teeth grow in at different rates for children after surgery) and nutritional advice. Awareness campaigns carried out by NGOs such as Mission Smile consist of checking children to see if they are in condition to undergo such an operation.

The U.S. National Institute of Environmental Health Sciences conducted a study in 2007 which found that women who take folic acid supplements early in pregnancy may reduce the chances of the baby being born with a cleft. labial.

Varanasi-based maxillofacial surgeon Dr. Ravi Kant Singh is also engaged in cleft surgeries on weekends. It clarifies the correlation between folic acid intake and fewer children born with clefts. He says a regular intake of folic acid and iron by the pregnant woman during her first trimester is crucial, and a deficiency can cause a number of physical deformities in children, including cleft palate. Adults can also develop health problems due to such deficiencies, the consequences of which are not limited to newborn babies.

“For the past three years, we’ve had another albatross around our necks,” Dennis told the Citizen. “We had to divert funds for Covid, but now we’ve started racing again.” During the pandemic, Mission Smile had to stop operations for five months due to government instructions to stop elective surgeries. “It’s like rowing a boat upstream. Every year children are born with clefts. So if you stop doing it, you’re not staying in the same position, you’re going to fall back.

Regarding the cost of such surgery, Dennis says “Actually it could be anywhere between INR 85,000 to 1 lakh or 10 lakhs or even 20 lakhs” depending on where one is. operated. For each surgery at Mission Smile, the cost incurred ranges from around INR 35,000 to 45,000.

“I have been performing these operations for 12 years. In a month, I do at least 100, maybe 200 cleft lip and palate surgeries,” says Dr Singh, who works at Peace Point Hospital in Varanasi and is project manager for ABMSS (Akila Bharata Mahila Seva Samaj) who also takes care of cleft care. for disadvantaged children in India, among others.

While cleft palate/lip surgeries are one of the most common procedures that plastic surgeons are approached with, Dr. Singh says that in India, not all plastic surgeons undertake cleft surgeries. “In India, almost 99% of these surgeries are funded by charity. Thus, the people associated with these charities are the only ones to carry out the transactions.

It also obliterates the idea that there is an ideal age for such surgery. He insists that the two main factors in this regard are the nutritional/blood parameters and the weight of the baby, which are often linked to each other.

“The minimum weight of the child is the first thing that is important, and then it is the blood parameters of the child that must be investigated.” Dr Singh says that for a baby to have this type of surgery, their body weight must be at least 5.5kg or more – and due to malnutrition rates in India, a child of this weight is just as likely to be 3 months old that they must be a year old.

“The problem in India is that the majority of the patients are very poor so they are not able to feed or care for the child properly so he is malnourished,” Dr Singh told the Citizen. “These children reach the weight of 5.5 kg even at 6 or 8 months also, whereas an ideal growth would indicate this weight at 3 months.” Therefore, it would be inaccurate to determine a general appropriate age for cleft surgeries for children.

“The majority of patients aren’t very well educated, they don’t live in town…so they have no idea that this deformity can be corrected,” says Dr. Singh. He adds that 99% of cleft surgeries since 2001 have been government funded. “So you won’t see a lot of adults who have a cleft palate. The majority of surgeries on adults were performed between 2001 and 2008, so you won’t find many adults who didn’t have the correctional surgery.

Aditya*, 24, had cleft palate surgery at the age of 10. Not because of nutritional difficulties but because of her family’s inherent aversion to medical procedures. “I remember everyone in my family was very scared of hospitals and operations. So when the only way to fix it was surgery, my family tried to put it off for as long as possible. Sounds irresponsible, but I kind of understand.

He goes on to reveal, “My mother told me later that she was more afraid of the complications that might arise from the operation than from the operation itself. I was too young to understand that at the time. , obviously.

Aditya mentions that he didn’t experience any bullying or discrimination at school that he can remember, his teachers were always aware to protect him from it, and his friends respected him and didn’t treat him any differently. “But what I do remember is after I had the surgery and came back, it was treated less like a medical thing and more like a makeover, you know?” he told the Citizen. “But I couldn’t bring myself to think about it like that because I’d had actual surgery, not a haircut…so it was a bit confusing for me at the time.”

“Any surgery carries a risk of complications,” says Dennis. “In this, it’s minimal because it’s not abdominal. We are not going to the gastric tract. These are maxillofacial surgeries – only of the face – so it reduces the risk. However, he explains that surgery performed without proper safety measures could result in a severed palate. “So what happens is that the palate is well sewn up, but the child goes home and then puts in a finger or something. Otherwise, the risk of death is minimal.

“To conclude, I would just say that there are about a million children waiting to smile. And in my opinion, if not us, then who, if not now, then when, to help these children to to smile ? “

*name changed

Christine E. Phillips