Misinformation delays cleft surgery
A doctor at the hospital in Durgapur, India, mistakenly told them that Shyam would have to wait until he was five for surgery. And, because Shyam was feeding well and otherwise heathy, the family accepted the doctor’s advice and returned home to their village.
Later, a different doctor said that Shyam could have his cleft repair surgery much sooner and didn’t need to wait – but Rakhi and Milton didn’t feel able to go against the word of the first doctor and feared that earlier surgery could be harmful to their son.
Thankfully, Shyam didn’t suffer health complications related to his cleft lip and grew into a heathy, energetic toddler. The family were fortunate that in their community there was no malice towards Shyam’s cleft, only curiosity – people thought it may have been caused by an eclipse.
Patient recruitment programme finds families
Everything changed for the family when another local doctor told them about Operation Smile. Rahki explains, “In the house next door there is a doctor whom we call Rajakaka. He said, ‘Tomorrow, there is (an Operation Smile patient recruitment) camp in Murarai. You guys should come with your son.’”
Finding patients is the first step in Operation Smile India’s patient recruitment strategy, using community volunteers and staff members to raise awareness and prevent families like Shyam from having to wait years for treatment.
When Rakhi and Milton arrived at the camp, they were encouraged to see other children who’d previously had surgery, returning to register for follow-up care. Dozens of patients and their families had also arrived to meet with the Operation Smile India team led by Safir Rehman “Mithu” Seikh.
Mithu’s patient recruitment team talks to parents and carers about each patient to determine the appropriate next steps for their care journey. Mithu says: “We explain this work (to families). Let’s say a child has a cleft lip. As a result of having a cleft lip, that child will have big problems in school life. If a child has a cleft palate, (we explain) what problems they might face, when should the surgery be done, or if it is necessary.”
Dedicated cleft care centre provides long term care
After their consultation with Mithu’s team, Rakhi and Milton were elated to learn that Shyam could receive free surgery at the Durgapur Cleft Centre the following month. They also learned that Operation Smile would cover the costs of transport and food, as well as providing accommodation during their stay at the hospital.
The centre in Durgapur is staffed by surgeons, anaesthesiologists, orthodontists, dentists and speech therapists and aims to provide patients with the full package of comprehensive care both before and after surgery.
Thousands of life-changing operations have already been carried out there for people in surrounding towns and villages who would previously have had to travel hundreds of miles to find medical care.
What we are doing is increasing access to not just surgery but speech, dentistry, orthodontics, and going closer to the patient. One of the biggest challenges in India is the division between the urban and the rural divide when it comes to access to health. Health infrastructure, health care workers -everyone’s concentrated in urgan areas.Abishek Sengupta, Executive Director of Operation Smile India
Life-changing surgery and follow-up care
After a month of anticipation, Shyam’s family arrived at the centre and waited eagerly in the patient ward for his pre-surgical health evaluation. Shyam was now three years old, and starting to ask his parents questions about why his lip was different, so this life-changing surgery had come just in time.
The Operation Smile India team found Shyam to be in good health and surgeons repaired his cleft lip later that same day. Surgery is just the start of Shyam’s care journey – the team will be on hand to provide a lifetime of follow-up care and support to Shyam and his family.
Now the early memories of looking and feeling ‘different’ will fade, and Shyam can enjoy his new smile and a much brighter future.