After spending her lifetime on a liquid diet and only dreaming of eating chocolate cake, 13-year-old Mecca resident Ohod Abdoahmed Al-Daheri couldn’t contain her excitement as she fulfilled her dream in Mumbai last week.
Eight days after the surgery, Dr Sanjay Sharma allowed 13-year-old Ohod to enjoy her first slice of cake
The teenager was suffering from a rare condition known as esophageal leiomyomatosis, which is a benign tumour in the food-pipe. It was a blockage as wide as 12 cm and double the size of her heart that prevented her from eating anything. She underwent surgery at the Asian Institute of Oncology to remove the tumour.
The family of Ohod checked every neighbouring country for treatment, including Egypt, but found solace at The Asian Institute of Oncology in Mumbai, where the condition was not only diagnosed correctly but was treated successfully. Celebrating the beginning of her journey to eating, she ate a chocolate cake at the hospital last week, and said that she will always remember India as the country that made her dreams come true.
Ohod, the youngest of five children, started showing the symptoms of the ailment at the early age of three years. An interpreter, who had helped the family members communicate with the doctors, said that the family realized the issue when Ohod started vomiting after attempting to eat anything. They run a guesthouse in Mecca.
“She was kept on a liquid diet and the only thing she could eat was ice cream. Anything else she tried to eat she vomited. They tried every single hospital in the Middle East. None of the doctors could find a solution to the problem,” the interpreter said.
After checking all the hospitals of Saudi Arabia, the family travelled to Jordan, Syria, Yemen and eventually Egypt, where the doctors informed them about the danger of her young age and carrying out the surgery. While the family had almost lost all hope, through a close family friend, they got to know about the Asian Institute of Oncology and came to Mumbai in the first week of October for the treatment.
Talking to mid-day, Dr Sanjay Sharma, surgical oncologist at Asian Institute of Oncology and the Lilavati Hospital, who treated Ohod, said that an endoscopy and biopsy confirmed the diagnosis of leiomyomatosis of the lower part of the esophagus (food pipe) and esophagogastric junction, causing total blockage of the food pipe. He added that a CT scan showed that the blockage went upto the neck, two centimetres below the voice box.
“The food pipe, being an expandable organ, was stretched due to the tumour that restricted the digestive process. That’s the reason she was continuously vomiting since the food couldn’t be digested. There was no way we could treat it without surgery since the blockage, expanding upto 17-18 cm at the lower end of the food pipe was pushing the internal organs,” said Sharma.
The team of doctors, in a four-hour long surgery that took place on October 8, removed the tumour-ridden part of the food pipe and replaced it with a new one, made out of a tube fashioned from the stomach. The surgery was done carefully to avoid any apparent marks on the body, considering the probable issues the conservative family might face in the future.
“Eight days after the surgery, we had allowed her to eat and she said that the first thing she wanted to eat was a cake. She could barely contain her excitement when a cake was brought into her room but she asked me to cut it. We together cut the cake and finally at the age of 13 she started her eating journey with us,” said Sharma.
The family thanked the doctors and team of AIO for conducing the surgery. “We are going back with a message that this was the place where we finally found peace and could fulfill our dreams,” said the family with the help of a translator.
Esophageal Leiomyomatosis is a rare clinical entity. Only 24 cases of esophageal leiomyomatosis can be found in medical literature in children less than 14 years, confirming the rarity of the disease.
In pediatric patients, the usual age at presentation is between 10 and 14 years. Because of its rarity, the preoperative diagnosis is usually difficult. Chest X-Ray, barium swallow test, endoscopy, CT scan, MRI and EUS are commonly used diagnostic modalities.