Over 1,000 babies born with cleft lip every year

Officials, including Prof Cate Crowlie, a speech therapy trainer, demonstrate cleft lip condition during training in Seeta. Photo | Esther Nakalya

What you need to know:

  • The studies done in Kiruddu National Referral Hospital, Cure Mbale, Surgical Centre Mbarara, Smile Care and Corfu Entebbe were conducted by Smile Care Uganda, a non-profit organisation and charity providing corrective surgery for children with cleft lip and palate.

Studies conducted in five health facilities show that about 1,100 children are born with cleft deformity every year.

 The studies done in Kiruddu National Referral Hospital, Cure Mbale, Surgical Centre Mbarara, Smile Care and Corfu Entebbe were conducted by Smile Care Uganda, a non-profit organisation and charity providing corrective surgery for children with cleft lip and palate.

Among the hospitals selected for study was Mulago National Referral Hospital, which carried out research in the labour ward settings to determine the incidence of cleft lip and palate among neonates (a newborn child).

The Mulago study alone specifically estimated about 17 neonates with cleft deformity among 12,713 newborn children between February 2008 and February 2009.

Mr Eric Mugoya, a programme coordinator at Smile Care Uganda, said: “This suggests an increase in the numbers of children born with cleft in relation to the rising numbers of patients seeking surgical procedures today.”


The deformity

This birth defect that commonly affects unborn children usually manifests as openings or splits in the upper lip, the roof of the mouth (palate) or both.

According to Mr Mugoya, cleft clip causes the facial structures that are developing in an unborn child not to close completely.

He further said:  “This defect makes it uncomfortable for children to live among other people, as they are disregarded in society and isolated.”

Citing the stigma that revolves around this deformity, Mr Joseph Kariuki at Smile Train, Nairobi shared the discomfort inflicted on victims. He said: “Children born with cleftlip have issues eating and speaking, as well as stigma because people do not understand that it is a medical condition while relating it to myths.”

The discomfort, he added, causes prolonged pneumonia among children and can be attended to early with surgical interventions.

Experts have noted that there is no specific cause for cleft lip and palate except it being associated with environmental and genetic factors.

Mr Duncan Musasizi, a speech therapist at Makerere University, however, linked the deformity to poor nutrition and bad habits, among expectant mothers.

He explained: “There are no specific causes to this deformity except for genetics that play the greatest role.”

Mothers who smoke, drink alcohol, he shared increase the risk of getting cleftlip in their unborn children.

Mr Kariuki additionally encouraged mothers to attend antenatal clinics and take folic acid supplements before birth.


The initiative

To avert the rise in untimely death among neonates and issues associated with the condition, actors in the sector have come front to offer solutions, one of which is to offer free surgeries, an initiative implemented by Smile Train and Smile Care Uganda for the past three years.

Dr Rose Alenyo, a plastic surgeon, said this initiative was coordinated after compiling data on neonates born with the deformity in the central region.

“We started out with 15 surgeries after gathering information from centres such as Kiruddu National Referral Hospital, Cure Mbale, Surgical Centre Mbarara and Corfu Entebbe, among others.”

She told the Saturday Monitor that the deformity can be treated to fight stigma and enable children to live a full and productive life.

Mr Mugoya revealed that more mothers are coming out to seek for better management of the condition.  He explained: “We have offered surgeries to about 3,640 children aged three months to 14 years that are born with gaps in their mouth.”

However, he added, it should be noted that these children remain affected with speech, which prompted an intervention in speech management after a successful surgery hence introducing a speech therapy programme.


Intervention

The programme which targets to improve speech patterns among cleftlip patients was recognised by different stakeholders.

While commending the training, Mr Kariuki said: “This programme provides a holistic treatment for patients not only offering more than 13,000 surgeries but also speech therapy.”

During a five-day training programme for speech therapists, Mr Mugoya estimated the programme to benefit over one million children with a speech therapy approach.

He stated: “This programme is the first of its kind here in Uganda and it offers training to specialists across East Africa to help the children have a better speech approach in regions of North, East and Western Uganda.

Mr Musasizi said there is a gap in training patterns among qualified professionals. “Currently there has been training at Makerere University School of medicine since 2008. However, we have less than 10 trained specialists among the 80 certified speech therapists practising in Uganda, and only 40 in Kenya and four in Rwanda.”


Impact

Ruth Nakato, a resident of Mukono said she struggled to manage the cleftlip condition for years until her daughter turned 14 years old.

“We learnt of her birth defect at the age of five but could not afford an operation of about Shs3m, until we interfaced the programme of free surgeries offered to cleft patients.”

Nakato rejoiced in the tremendous change that the programme brought in her child’s life as she managed to complete her studies and reinstate her health.

In the face of stigma, Faith Akidi was advised to withdraw her newborn child from breastfeeding because he was born with an opening nearing her nasal area.

She recalled: “I was told to stop nursing my baby so he could starve and die. My family believed the child was a curse that would extend to the entire clan if not gotten rid of.”

Luckily, Akidi learnt about the free surgeries and was counselled to disregard the myths and save her child’s life.

Today, her three-year-old son is receiving therapeutic care to manage his speech and pronunciation of words.