Cleft lip and cleft palate in Uganda

Cleft lip and cleft palate is a group of 3 congenital conditions that may affect a newborn baby. They are also known as orofacial cleft. The 3 disorders are (see Wikipedia):

1. Cleft lip 
2. Cleft palate 
3. And both cleft lip and cleft palate together.

The cleft lip may be on one side or both sides or in the center. It may extend into the nose when cleft palate has an opening in the roof of the mouth. These disorders can result in (see Wikipedia):

Feeding problems
Speech problems
Hearing problems
Frequent ear infections

These conditions are the result of tissues not joining together properly. The cause is unknown. However the corrective surgery has a very high success rate.

This 2011 study Incidence of cleft lip and palate in Uganda estimates the incidence of cleft lip and/or cleft palate at 0.73 per 1,000 babies born. 

The 2014 study Prevalence, pattern and perceptions of cleft lip and cleft palate among children born in two hospitals in Kisoro District, Uganda has similar findings, finding that 0.77 per 1,000 babies are born with cleft lip and/or cleft palate. The study adds that mothers and families need psychosocial support after corrective surgery to ensure a successful outcome:

This recommendation corroborates previous authors who reported that surgical care alone is insufficient if harmful beliefs continue to victimize the affected individual. Mednick et al. pointed out that care of the entire person includes providing scientific explanations and understanding of cultural beliefs that may continue to traumatize individuals with cleft lip and/or cleft palate even after surgical repair.

It is clear that cleft lip and/or cleft palate are the cause of stigma and prejudice. For the study 20 mothers were interviewed with the following results:

What do you think was the possible cause of the clefts?	Supernatural (evil/ancestral spirits)	11 (55.0%)
	Eaten by worm	1 (5.0%)
	Problems during pregnancy	2 (10.0%)
	Witchcraft	1 (5.0%)
	I do not know	5 (25.0%)
How do people regard a child with oral cleft?	Scared	4 (20.0%)
	Curiosity	2 (10.0%)
	Outcast	8 (40.0%)
	Normal	5 (25.0%)
	I do not know	1 (5.0%)

24 staff were also asked about cleft lip and/or cleft palate with the following results:

What is the perceived cause of oral clefts?	Drugs	4 (16.7%)
	Witchcraft	2 (8.3%)
	Bad omen	2 (8.3%)
	Inherited	5 (20.8%)
	Environmental	1 (4.2%)
	I do not know	9 (37.5%)
	No response	1 (4.2%)
What is your assessment of community social acceptability of the cleft lip/palate?	Accepted with reservation	1 (4.2%)
	Unlikely	1 (4.2%)
	No	22 (91.7%)

A toddler and its mother are over the moon with joy after a corrective surgery on a cleft lip at a private not for profit health facility; the Comprehensive Rehabilitation Services in Uganda.

What is the experience of having a baby with a cleft lip and palate. This article, Free surgery on child’s cleft lip thrills mother, tells the story of mother and her baby:

Baby born with defect: Instead of a smile lighting up the face of the 28 year old Namatovu Sophie upon her third birth last year, tears rolled down her desolate face. The little one she had brought into the world had a physical condition; a cleft lip.
“I cried as though the child I had given birth to was dead,” she said. “I was so terrified because I had never seen this condition before in my life, but the doctors at Mulago told me to remain strong.”
Then a few weeks back, Namatovu, a resident of Makindye division in Kampala, saw an advert about CoRSU on Bukedde TV. The hospital provides free life changing surgeries for children in Uganda.
Namatovu then gathered her confidence and headed to the hospital based on Entebbe road, sandwiched between Kawuku and Kisubi.
On Tuesday, the 6 month old Lizik Namwanga had corrective surgery—at no cost, and now, she can grin ear-to-ear, beautifully, like her two elder siblings.
Namwanga urges parents not to shun children with physical defects, as most of these can be corrected early on.
“Know condition before”: Malcolm Simpson, the CEO of CoRSU said part of the problem in Uganda is that parents do not respond swiftly to such cases. He says 80% of physical disability in the country can be prevented or cured.
“The problem here is that the disabilities are neglected for a long time. When a child become five or six years, then it becomes complicated.” Dr. Francis Nyiiro, the head of the orthopedic department at the hospital said it is prudent for mothers to know the conditions of their unborn babies.
“The beauty of knowing before is that you prepare the family for what to expect. It is traumatizing for things to take you by surprise.”
“You also get counseling so that by the time you get your baby, you are ready to start treatment.”
Financial hardships: CoRSU’s operations are largely funded by donors, but they are steadily pulling out their support.
In fact, the hospital expects to carry out 5000 surgeries this year, but currently, only funding for 3500 surgeries is available. “Donors are encouraging CoRSU to be self sustaining, so we are trying to balance between charging fees and providing free surgery for children,”
The hospital has a private wing. The fees charged at this wing are used to subsidize children’s surgeries. He is also looking a fund raising drive in Uganda that can contribute towards the construction of another ward.
“Uganda has over 30 million people. We need a few of these to contribute sh2000 so that we continue offering a good service,” says Simpson.
Would the hospital consider a Public-Private partnership with the government? “I do not think government has a lot of money, because it’s got its own public facilities to support. So what we might do is get a way of government hospitals referring children here for surgeries, and perhaps, government can help with free medicine,” the CEO said.

In summary, cleft lip and cleft palate are conditions with a high amount of prejudice and stigma. Successful surgery relies on a timely intervention, and on education of parents and nursing staff. When parents and nursing staff are educated the surgery has a very high success rate. It is important to understand that surgery affects more than just the person receiving receiving it. A successful surgery removes stigma and prejudice and prevents disability.

For more information on cleft lip and/or cleft palate see Smile train stories and Cleft, Overseas Projects, Uganda.