From Stigma to Surgery: Giving Hope to Children with ARM in Uganda
One of the most severe and devastating birth defects affecting children in Uganda is also one of the most common, and only complex life-saving surgery can correct it.
Anorectal Malformation (ARM), a condition that prevents children from being able to have a proper bowel movement, accounts for 18% of the neonatal surgical burden in Uganda. Yet access to surgery is scarce. Without surgery, ARM puts children and babies at risk of infection and malnutrition. Older children who’ve lived with the condition for many years often miss out of school as a result of the social stigma attached to it.
Winnies Story
When Winnie was born, her mother sensed something wasn’t right. Unable to afford a trip to the hospital, Winnie’s condition went untreated. Two years later, when she heard our outreach clinic was coming to her village, she brought Winnie along, where our healthcare workers immediately recognised the tell-tale signs of ARM and scheduled her for a consultation.
From the initial consultation, things progressed quickly with Winnie having the reconstructive surgery followed by the second operation once she had healed from the first. Both operations were performed by Dr Sekabira, the first board-certified paediatric surgeon in Uganda.
Why Is It So Hard To Diagnose ARM?
Ideally, if a child is born with ARM, they’ll be diagnosed straight away and booked in for an operation. But, like Winnie, delays in diagnosing the condition and a lack of awareness can hamper children from getting the medical care they need.
Many children are not diagnosed at birth, especially in rural areas where trained birth attendants and postnatal screening are limited. Some caregivers mistake the signs of ARM for constipation or minor illness, delaying medical care.
Older children with anorectal malformations (ARM) go untreated for years due to delayed diagnosis or limited access to care. This can be incredibly challenging, as delays in treatment often lead to stigma. The condition frequently causes incontinence, which is deeply embarrassing—especially for young people attending school. As a result, many are forced to drop out due to the shame they experience, leaving many children illiterate.
The Challenges Of Trying to Treat ARM
The cost of ARM surgery can range from £250 to over £1000, depending on complexity, hospital, and location. Colostomy bags can cost between £1 and £10 each, and a regular supply is essential. However, many of the families we help live in rural areas and are subsistence farmers earning enough just to sustain themselves.
A colostomy requires careful hygiene. The bags must be changed regularly at least three or four times a day, and clean water and antiseptics are essential to keep the area clean and reduce the risk of infection. Neither is readily available. Most parents resort to non-hygienic coping mechanisms such as tying rough clothes around the colostomy/stomach, which usually results in infections, excessive bad odour with associated social embarrassment and exclusion.
ARM surgery is not a routine operation but a complex operation requiring skilled expertise. Yet Uganda has only seven paediatric surgeons. We’re extremely fortunate to work with Dr John Sekabira, one of the first board-certified paediatricians in Uganda, who has performed a large number of these operations for our young patients. Through tireless dedication, Dr Sekabira has also trained other surgeons throughout East Africa, helping expand access to ARM surgery.
Transportation has always been a costly barrier to seeking medical care. As an ARM procedure can take several appointments, families may struggle to afford several trips to the hospital. As a result, some families who don’t have the money are forced to delay or forgo treatment altogether. In the worst cases, children live with untreated ARM into adulthood.
Humanity Direct Is Working Hard to Increase Access to ARM Surgery.
Our healthcare workers are trained to recognise children with ARM. Thanks to donations, we are able to cover every aspect of a child’s operation. The treatment consists of a three-stage surgical procedure.
1. Creating a colostomy: This is to divert stools before the reconstructive surgery. This type of surgery is not easy to access or timely enough for many patients due to the absence of skilled surgeons in most parts of the country. The operation is only available at highly specialised medical centres in the capital city.
2. Posterior Sagittal Anorectoplasty (PSARP): This is the reconstructive operation in which the surgeon creates a new anal opening within the sphincter muscle. This procedure requires extraordinary surgical precision and understanding of pelvic anatomy. The patient is also fitted with a colostomy bag, allowing the surgical site to heal before the final operation.
3. Colostomy Closure: The final operation, once the surgical site has healed and proper bowel function is ascertained, is to close the colostomy, restoring normal bowel flow.
Donations cover every aspect of a child’s operation. As well as the actual surgery, we also cover every trip that needs to be made from the first consultation until the patient is formally signed off.
Donations also cover the cost of any hospital stay that is needed, and every family is given the colostomy bags and the hygiene products needed to properly care for the colostomy until the wound is closed.
Donations make this all possible.
To find out how you can help children like Winnie, please visit our Patient Page, and you can help cover the costs of a child’s life-saving and life-changing operation.
If you’re a corporate donor, you could even fund an entire clinic of these operations.