When a child is born with an anorectal malformation, the condition is usually diagnosed quickly as the defect is obvious. In many cases the child will require urgent surgery to create an opening for the large intestine (through the abdomen) in order to pass stool. This is called a colostomy. The child is then allowed to grow a little bigger before doctors attempt to continue the repair and reverse the colostomy.
For children from Burma, the cost of this surgery is beyond the means of most families and it is common for a family to go to great lengths to come up with the funds to cover the cost of their child’s operation. Some have borrowed money from their community and village leaders to save their child’s life. Others have sold cows, pigs or motorbikes in order to raise the funds.
Imperforate anus (also called anal atresia) is a congenital condition whereby the rectum is malformed and the opening of the anus is either missing or blocked. The cause of this condition is unknown and it is relatively common affecting about 1 in 5,000 children. It affects both boys and girls.
Once the initial surgery is complete, the child is left with a colostomy. In the West, it is common to use colostomy bags to collect the stool as it passes through the hole created in the abdomen. The child will continue to undergo repairs and have a colostomy reversal while still young. However, for children from Burma, a colostomy bag is a luxury and the cost of further treatment and surgery is prohibitive. It is common for children to adapt to their condition and parents learn to look after their child’s colostomy by whatever means they can afford. BCMF has seen many different ways that resourceful parents come up with instead of colostomy bags. These include use of discarded clothing or rags wrapped around the child’s body to cover the colostomy. The rags are changed when stool is passed and the dirty rags re-washed and used again. Other methods have been covering the opening in the abdomen with plastic (an old plastic bag) and holding it in place with a tightly bound cloth/rag as well as placing cotton balls over the opening and keeping in place with a rag then discarding. We have even seen an old cotton surgical mask being used to cover a colostomy!
However persistent odour, deep skin excoriations (as a reaction to gut contents on skin), and infection from unhygienic environment can also occur. Living with a soft delicate stoma on the abdomen can make play difficult as trauma to area can occur from a simple knock. Conditions such as prolapse, stensosis, bleeding, sepsis and necrosis will always be a constant threat.
With many obstacles facing these families (often arising from poverty and conflict), further treatment is not a priority as the child can learn to live and adapt to their condition. However, when parents hear about the BCMF program at the Mae Tao Clinic, many decide to make the journey to get treatment. That means that BCMF sees children of varying ages arrive with colostomies which require further treatment to enable the child to lead a normal life.
The process of treatment is extensive with the child requiring multiple procedures after an initial referral to a hospital in Chiang Mai (as this procedure is not available either at the Mae Tao Clinic or the local Thai hospital). One of the procedures is called a PSARP (also known as a pull through operation) in which a part of the intestine is “pulled down” to form a rectum and sewn into a newly-made anal opening in the perineum. The operation is performed by laparotomy (a large incision through the abdominal wall to gain access into the abdominal cavity). After surgery, the newly-formed anus needs to be dilated regularly until a soft scar is obtained. The colostomy can then be closed. Further out-patient appointments are then required to check progress.