Though the girl’s school has been supportive, the nine-year-old says she misses going to school. “My favourite subject is Mathematics and I want to start going to school as soon as possible. Now I study at my tuition class based on the notes that my school teachers send to my mother’s phone"
The girl and her parents with Dr Manjusha Sailukar during a follow-up on Thursday. PICS/ RITIKA GONDHALEKAR
In a rare, medically advanced case, a nine-year-old was recently diagnosed with a congenital anorectal malformation known as recto-vestibular fistula, a condition typically identified and treated within the first few days or months after birth. What makes this case exceptional, however, is not just the diagnosis but the fact that the condition went untreated for eight years.
Not treated early…
“Though she would pass stools every day, she would cry. For the first six months, we didn’t understand. Later, when I discovered she was passing stool sfrom a small opening just below her vagina, I realised that this was not normal. We immediately took her to a civic hospital where the doctors told us that she could not be operated on as she was too weak and that her haemoglobin levels were also quite low. We waited a few days and approached the doctors at the civic hospital again. They asked us to visit another state-run hospital, but we could not take her as we had some family issues,” said the girl’s mother.
(From left) Dr Aditi Upadhye and Dr Pooja Srivastav, pediatric surgeon and pediatric urologist Dr Manjusha Sailukar, general and laproscopic surgeon Dr Janhavi Kapadia and Dr Rohan Maske
However, this resulted in the little girl constantly suffering from fever. “A few weeks later when her temperature wasn’t lowering, we took her to the state-run hospital where she was admitted for almost 10 days. We had the worst hospitalisation experience. My wife and daughter were forced to sleep on the floor as there was no bed available in the ward. Someone also stole my purse and few other belongings. So, we brought her home and I sent them to our native place in Kolkata. But she couldn’t be treated there so we brought her back,” said the girl’s father.
Late, but finally done
In the first week of June, the couple visited KJ Somaiya Hospital, where doctors explained the condition to them and ensured that their little girl can be operated on and lead a normal life. “When they approached us, the girl was clearly malnourished as she was completely on a liquid and semi-solid diet for major years of her life as whenever she would consume any solid food, she would not be able to pass stools completely,” said Dr Manjusha Sailukar, pediatric surgeon and pediatric urologist, and associate professor at the hospital.
Explaining the operation, Dr Sailukar said, “The treatment involves a corrective surgery called anterior sagittal anorectoplasty (ASARP) whereby the rectum is repositioned to its normal anatomical location. Normally, a female body has urethral opening and vagina inside the vestibule and is covered with the clitoris; and the anus is further down. However, in this case, the girl had all these three openings inside the vestibule and thus we had to pull down the third one.
We separated the rectum from vagina and positioned it to the spot where the anal opening should be present, taking care to place it inside the normal anal sphincter muscle (the muscle which has the capacity to hold and release the stool as per the human’s requirement). Later the incision from vagina to relocated anus was closed which is called the perineum.”
She further mentioned that there are two situations — one where the patient is able to pass stool through the vestibular opening (which is the abnormal opening) in a semi-solid form without much dilatation of the large intestine and another where the patient suffers from constipation with hard stools, giving rise to a grossly dilated large intestine.
“In case the colon is too dilated (especially in delayed presentation in older children), we first operate and take out the colon temporarily through the anterior abdominal wall (colostomy), then perform anorectoplasty, and then in the third stage, we close the colostomy, which means three operations are performed. However, in this girl’s case, we could treat her with just one operation as the colon was fairly normal size, which helped her in faster recovery,” added Dr Sailukar.
Post-operative care
While the girl is now recovering well, she has to undergo rigorous post-operative care and physiotherapy. “We have been told that she should not apply pressure while passing stools and the doctors have also taught her a few exercises as a part of toilet training,” said the girl’s mother. She will soon start physiotherapy once she completes her recovery period. “However, for at least a year, she will need to visit me and the physiotherapist regularly as we need to observe her frequently till she heals completely and is able to pass stools normally,” said Dr Sailukar.
Though the girl’s school has been supportive, the nine-year-old says she misses going to school. “My favourite subject is Mathematics and I want to start going to school as soon as possible. Now I study at my tuition class based on the notes that my school teachers send to my mother’s phone. But, I am waiting to start school again,” said the girl.
Awareness required
While medical experts mention that this is quite a common defect in children, unfortunately, due to lack of awareness, social stigma (especially in the case of a female child) and seldom financial problems or lack of access to good healthcare, many families delay seeking medical advice despite knowing that their child is suffering. “It is necessary that medical programmes are organised by health institutions to create awareness among parents about the lesser-known problems such as this one. Schools and nursing homes are two such places where this can be done regularly,” advised Dr Sailukar.
What is recto-vestibular fistula?
Pictorial representation in the girl’s case, (right) Pictorial representation of a normal anal opening structure
“It is a congenital condition where the rectum opens abnormally into the vestibule of the vagina, causing stools to pass through the wrong opening. The rectum opens right below the vagina instead of the natural spot of the anus in a regular human body. It’s a rare event in this case as she wasn’t operated till the age of nine, which could have led serious health complications such as urinary tract infection and problems in her intestines,” said Dr Neha Nabar, paediatrician and neonatal ICU specialist.
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