When the nurses handed Rose her second baby, the cleft lip and palate was evident. She was beautiful though. So her outmost worry was not the split lip but the reality of how to breastfeed and care for her baby.  Shortly after birth, she tried to breast feed her just like she had done with her previous babies. Breast feeding was not rocket science to her. The baby wanted to suckle but she could not hold the nipple in her mouth and after hours of trying to suckle without suction, it was evident that the baby’s sugar levels were going down. She feared she could die of starvation.

A cleft is a gap or split in the upper lip or palate the roof of the mouth.   In Uganda, the prevalence rates are reported between 0.8- 1.3 per 100,000 live births which is approximately 1,100 babies born with clefts annually.

Infants with cleft lip and especially with a palate usually have problems feeding largely because they are unable to “suckle” during breastfeed. They take longer to feed, swallow more air and easily aspirate or choke during their feeds. They frequently suffer ear and chest infections as a result of the aspirations. Malnutrition is commonly seen in cleft lip and palate infants.

How to breast feed their babies is the most common question that health workers encounter from mothers of babies born with cleft lip and palate. To best understand how to breast feed cleft babies we need to first define and understand the parameters of breast feeding. According World Health Organisation, exclusive breastfeeding is when the infant receives breast milk; it includes milk expressed or milk donated from another nursing mother, ORS and drops. Cautious to note is the fact that expressed breast milk, donated breast milk, breast milk along with supplemental formula counts as breastfeeding.

Depending on the severity of the cleft and palate, breastfeeding a cleft baby requires more effort for both the mother and child, but with determination and patience these children usually pick up and weigh just as good as babies without oral-facial problems.

It is important that these babies feed well to prepare them for surgery. A child with cleft lip and palate can feed in a number of ways which include among them; on the breast, pumped and donated milk served in specialized feeding bottles and spoons. Believe me this is breast feeding the harder way.

The infant with cleft palate can also be assisted to feed better by holding the child more upright at about 45⁰ during feeding as well as position the nipple to the side of the mouth that is not cut. In the absence of suction mothers need to manually express breast milk into the baby’s mouth. Experts also suggest supporting the infant’s chin to stabilize the jaw during sucking and supporting the breast so that it remains in the infant’s mouth.cleft2

Just as in normal breastfeeding, knowledge support is important. A lot of the fears that the parents have are due to lack of information. With the information in place, most mothers report being more in control and less stressed about their babies’condition.

Nutritional rehabilitation is required for the infants that are malnourished, to prepare them for safe surgery and is usually continued for a while after the surgery. Breast milk contains lysozyme and epithelial growth nutrients that help prevent infections in wounds.

Repair of the cleft lip & palate is performed by surgeons specially trained in cleft repair. Presently, there are several hospitals in Uganda where cleft repairs are performed free of charge, thanks to funding from Smile Train.

By Kirabo Rehema

Communication Officer- CoRSU Hospital

CoRSU Rehabilitation Hospital— Helping Children with disabilities through plastic surgery

Annual CoRSU Sports Event 2017

A struggle has many faces, sometimes you don’t have to be in pain to suffer. You just need to be at a play ground watching other kids scream away in ecstasy as they kick .


“I think for me, watching them play was not my biggest proa ball or run around in circles chasing god knows what under the sun for you to sufferblem. My problem was trying to imagine myself moving to their rhythm. I always thought to myself, I can’t do that. Can I? That for me was a real struggle”

My name is Damastin; I was born with a deformed short limb. At 3 years old when every child is mastering the art of walking, I was nursing a healing stamp from an amputation because the Doctors said my limb had no sensation, therefore it was useless to keep it.

Every night, I prayed to god to give me a new leg. I just couldn’t understand why my siblings could have legs and I didn’t. I couldn’t understand why they could play, run around without a care in this world and I couldn’t.

On most occasions my siblings played with the neighbourhood kids and I was but a spectator, mulling over why I couldn’t do what they were doing.

When I was 7 years old, the Doctor’s at CoRSU Rehabilitation Hospital gave us a ray of hope. They told my mother, I could have a chance to walk again if they reshaped my stamp and gave me a prosthetic limb

By 2011, I had undergone the surgery, healed and was started on the process of rehabilitation. Towards the end of 2011, my life was happening so fast, I could run around all I wanted, play in puddles of water when it rained— I too, didn’t have a care in this world.

As a child, you are born with an inherent need to play and that need does not exclude children with disabilities. Children with disability can often feel excluded from mainstream society. Consequently they can feel that they do not fit in and are inferior.

Inclusive play is a way of bridging the gap between mainstream and disabled children. Both groups can benefit from these play methods and learn a lot from mixing with those different from them.

Christine Tusiime, the Head of Rehabilitation Services at CoRSU Hospital says that children at all ages learn in all aspects of development through play to gain emotional, social, physical and mental development.

Tusiime states that playing is a full time occupation of children, if you take that away or if a physical limitation takes it away the child’s developmental milestones will be affected or delayed.

“Playing for children with disability doesn’t only make the rehabilitation process fun and less daunting but it introduces the child with disability to games they can actually play within their own physical capacity”, Tusiime said.

This alone helps the child become more confident on the play ground and it gives them the opportunity to introduce new games to their physically able friends.

Tusiime adds that this kind of inclusive play will help a child with physical disability get a clear understanding of their physical differences from the others, develop an attitude of tolerance, become more accepting of other people’s attitudes but most of all, help them learn new languages because Uganda is blessed with about 50 ethnic tribes and the play ground is known to have no cultural barriers as children who speak totally different languages can depend on sign language to communicate with each other while they play.

Over 5000 corrective Orthopaedic and Plastic Reconstructive surgical procedures are performed at CoRSU Rehabilitation Hospital, every year, out of those, about 3900 are of children.

Even though CoRSU is a Hospital that’s known for giving hope to people with disability in Uganda, not all the 3900 surgical procedures performed on children are corrective orthopaedic surgeries.

Which means some children remain physically challenged but still undergo rehabilitation care at CoRSU Rehabilitation Hospital to cope with the challenges of being disabled.

Moses Kiwanuka, the Head of Outreach and Partnerships at CoRSU Rehabilitation Hospital asserts that inclusive play is the only way you can break the barriers and the negative attitudes of communities towards children with disability. Playing in itself creates independence for these children but also fosters interaction between the physically disabled children and those who are physically able.

Damastin’s life is back on track now, after getting a prosthetic limb and undergoing rehabilitation at CoRSU, his new limb has afforded him access to the play ground and to take part in games that he covetously longed to be a part of.

Today he goes to school just fine and his captain of the village football team. Fortunately Damastin is one of the many children who are forging their own inclusive communities and games. In short we can say he has broken the barriers around exclusive games which are known to be played by physically able children.

Damastin is not asking for permission to be part of these games anymore. That’s why in honour of this year’s international disability day, we at CoRSU Rehabilitation Hospital have a need to find answers to this big question— is inclusive play possible?

Join the conversation as we celebrate this international disability day with a disability sports event themed, “Break the Barriers—Play Together on Saturday the 25th of November, at CoRSU Rehabilitation Hospital.

And if there is a child with disability living in your community? What have you done or are you doing to help them have access to their right to play?

Let’s have this conversation and remember to use the hash tag #BreaktheBarriers.