Dealing with a baby born with no anal opening
Statistics reveal the defect's occurrence in approximately one in 5, 000 live births, with a slight predilection for males.
Dr Stella Nimanya, a paeditric surgeon at Mulago Hospital, explains that the initial phase of the operation involves re-routing the bowel out through the abdominal wall for the baby to pass stool. (Credit: Fred Mubanda)
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Doctor Nasser Kakembo says imperforate anus accounts for 25 per cent to 35 per cent of congenital malformations admitted to Mulago Hospital. (Credit: Fred Mubanda)
Mildred Mugisa from Uganda's western district of Hoima district gave birth to a baby that had no anal opening — a condition called imperforate anus or anorectal malformation.
Her daughter, who is seven now, still experiences stool leakage despite having an anal opening successfully created through surgery at Mulago National Referral Hospital in Kampala.
Typically, imperforate anus — a rare birth defect — can present challenges in stool passage, with the baby unable to have normal bowel movements.
But thanks to regular training, Mugisa says her daughter's bowel control is improving.
While some babies are born with no anal opening, others may possess a passage that is either abnormally located or exceptionally small, akin to a pinhole, according to Dr Nasser Kakembo, a senior consultant surgeon at Mulago Hospital.
Fortunately, surgical intervention offers a remedy for this condition, he says.
Statistics reveal the defect's occurrence in approximately one in 5, 000 live births, with a slight predilection for males.
“One to two cases of imperforate anus are referred weekly to Mulago Hospital, with a higher incidence among boys than girls. However, incomplete record-keeping in Uganda, particularly among traditional birth attendants, complicates comprehensive data collection,” explains Kakembo.
He says imperforate anus accounts for 25 per cent to 35 per cent of congenital malformations admitted to Mulago Hospital.
Causes and symptoms
The cause of imperforate anus is not known, as there have been no genetic factors identified to be responsible for the condition.
However, medical experts have identified some factors that increase the risk of the defect, including smoking during pregnancy and substance abuse.
The condition can only be diagnosed after a child is born and it manifests through failure to defecate within the first 24 hours.
Swelling around the baby's belly button, a missing anus or an anus in the wrong place may also point to imperforate anus.
As a result, stool comes out in the wrong place, such as the vagina in girls, and scrotum or base or tip of the penis in boys.
Diagnosis and treatment
Diagnosis for imperforate anus hinges on postnatal assessments, with imaging techniques such as X-rays, ultrasounds, and magnetic resonance imaging to ascertain the extent and location of the malformation.
The classification of imperforate anus depends on where the anus is placed.
Kakembo explains that the baby can have an ectopic anus, which may mean that the anus is present but too tiny to pass stool.
In girls, rectovestibular fistula — a congenital disorder that occurs when the rectum and the vulval vestibule of the female genitalia are abnormally connected — is considered the most common anorectal malformation.
Treatment should ideally be done right after birth.
According to Kakembo, treatment typically involves a phased surgical approach, beginning with a colostomy to establish a temporary stool passage.
It is done in three phases to create a functional connection between the rectum and the newly formed anus.
The child is given a two-month break to recover and return to hospital to close the colostomy.
Surgeon's perspective
Dr Stella Nimanya, a paeditric surgeon at Mulago Hospital, explains that the initial phase of the operation involves re-routing the bowel out through the abdominal wall for the baby to pass stool.
After a colostomy, the baby is discharged but is monitored in outpatient clinics to observe their health, growth, and immunization progress.
"To schedule the next operation to create an anal opening, the baby must reach a sufficient body weight, around 10 kilogrammes, typically between eight to 10 months of age. Alternatively, some children may undergo the surgery at one year old," says Nimanya.
The duration of the operation depends on the type of anorectal malformation.
For the high type, where no anal opening is present and the rectum ends above the muscles at the bottom of the pelvis, the surgery takes four to five hours.
For the low type, where the rectum ends below the muscles at the bottom of the hip bones, the surgery duration is between two and three hours.
Nimanya notes that the surgery is more complex in boys than in girls.
Post-surgery, bowel training becomes imperative. After surgery, the child can eat soon but pass less stool often that is more solid.
Kakembo, the consultant surgeon at Mulago, says some of the children get on and off constipation. To avoid constipation, a high fibre diet that including fruits, vegetables, juices earlier to the time of bowel training is recommended.
However, children who have had anorectal surgery gain bowel control more slowly, depending on the type of anorectal malformation and the surgery done to repair it.
Some children may need to participate in a bowel management programme aiding in faecal control and management of constipation or incontinence.
Kakembo emphasizes that these surgeries are provided at government-funded facilities free of charge. However, patients may opt for private health facilities if they can afford the costs since each phase of the operation is charged separately.
There are limited specialized surgical facilities in Uganda where the condition can be corrected.
They include Mulago Hospital, Mbarara Hospital and Entebbe Children’s Surgical Hospital.
Colostomy care
Kakembo says that for parents navigating colostomy care, guidance from healthcare providers is essential, encompassing education on colostomy maintenance, proper hygiene, and resourceful alternatives for low-income families.
Parents who cannot afford a colostomy bag or stoma bag are advised to have multiple clean pieces of small cloths, which they could change constantly whenever the child passes stool.
Caregivers are advised to apply Vaseline around the colostomy regularly anytime the child passes stool to prevent stool burns and wounds.
It is also important to note that the skin around a stoma (an opening on the abdomen that is connected to the digestive system to allow waste to be diverted out of the body) is delicate.
Therefore, harsh clothing can cause scratching and lead to bleeding, according to Kakembo.
A stoma bag, also known as a colostomy bag, is attached to the stoma to collect stool. The bag may need to be changed two to three times a day and costs between sh5,000 and sh6,000.
Challenges
The lack of paediatric theatres in every regional referral hospital poses a challenge, as doctors are unable to conduct corrective surgeries for babies born with anal openings and other related congenital birth defects.
Furthermore, there is a shortage of specialized doctors.
Kakembo reveals that although there are 10 such doctors nationwide, only four paediatrician surgeons are undergoing training — a shortage that results in a growing backlog of patients in need of specialized operations.
There is also a shortage of funds to hold medical camps across the country, exacerbating the burden of children suffering from various anorectal malformations.
Nimanya says surgeries are often delayed because some patients cannot afford the cost of X-rays and other medical items.