Devine Mukeshimana went into labour on November 11, last year, expecting to hold in her arms a bundle of joy. She got the bundle, Kelia Iradukunda, but not the joy. The cleaner at ASK Rwanda thought her world was crushed. Her agony was that baby Iradukunda was born with a cleft lip.
“I was frightened the first time I saw my baby with a cleft, it took me a long time to accept the situation. Carrying this baby for nine months and then discovering its deformity was the most challenging moment in my life. I had the burden of accepting the fact that my child was deformed,” Mukeshimana said.
A cleft is a congenital defect (resent at birth but not necessarily hereditary; acquired during fetal development) that involves bone and tissues on the face, head or any other part of the body like hand and feet. A cleft palate is a hole in the roof of the mouth. Cleft lip and palate can occur on one side or both sides.
According to Dr Charles Furaha, the only qualified cleft surgeon in the country, a child can suffer from a cleft lip, a cleft palate or both. The exact cause is.
“There are many factors that may cause or are involved in cleft lip and palate formation. However, it has been linked to genetic and environmental factors such as dietary and vitamin deficiencies during pregnancy, exposure to toxins, and teratogenic drugs,” Dr Furaha said.
He said the surgical procedure used in reconstructing the cleft lip is just called cleft lip repair, and it’s the only procedure undertaken to correct the deformity.
“I have encountered hundreds of cases during my training as a plastic surgeon and during my current practice. I have operated on about 60 cases in the country from both Rwanda Military Hospital and King Faisal Hospital, Rwanda,” said Dr Furaha.
The doctor also said, currently, there is no known way of preventing cleft lip and palate, but hat the deformity, once repaired, is one major step in living a normal, trauma-free life.
“A prenatal diagnosis through ultrasound is possible and allow to start counselling parents before birth of the baby,” he said.
Public urged on free surgery
According to Andrew Karima, the project coordinator of Rwanda Smiles, staff from Rwamagana Hospital and Gihundwe Hospital are currently attending a training programme that aim is to teach them how to handle cleft cases, pre and post-surgery care and feeding of cleft infants who require special care.
Rwanda Smiles, throughout last week, was performing training at Rwamagana Hospital for medical professionals to equip them with skills to handle clef lip and palate patients. The training was in partnership with the Ministry of Health.
Rwanda Smiles, a joint collaboration between Operation Smile and Smile Train, urge people with the deformity, of all age, to seek their services.
Karima said Rwanda Smiles seeks to create a cleft-free Rwanda by providing free surgery to the backlog of patients needing care, and training to local Rwandan medical professionals so that they can take care of their own children.
“The public should register for free surgery with Rwanda Smiles or to register anyone else from your community for free surgery, please call or SMS the Project Coordinator on 0786874095 or 0725019462 or call 114 Toll Free,” said Karima.
“One in 1,000 children in Rwanda are born with a cleft lip. Some babies get a misfortune of being born with both a cleft lip and a cleft palate in a country where cleft is poorly understood and with only one plastic surgeon in the country, the solution is literally not around the corner,” he said.
In Rwanda, it is estimated that about 300 children are born with a cleft lip or palate each year.
This condition is the most common birth defect but can be corrected by surgery. However, an estimated one in 10 babies born with a cleft die before their first birthday, often because of preventable infections or due to the inability to properly feed.
Mukeshimana’s baby Iradukunda is one of the patients that will undergo surgery this year. She will have the opportunity to grow up normally with little evidence of the deformity that she was born with.
In March, Dr Bonavanture Nizeyimana, the director of public hospitals in the Ministry of Health, said government was doing all it could to have more Rwandans develop expertise in plastic surgery to curb reliance on foreign medical teams.
Prevention and coping mechanism
After a baby is born with a cleft, parents are understandably concerned about the possibility of having another child with the same condition. While many cases of cleft lip and cleft palate can’t be prevented, consider these steps to increase your understanding or lower your risk:
Consider genetic counselling. If you have a family history of cleft lip and cleft palate, tell your doctor before you become pregnant. Your doctor may refer you to a genetic counsellor who can help determine your risk of having children with cleft lip and cleft palate.
Take prenatal vitamins. Taking a multivitamin before conceiving and during pregnancy may help reduce the risk of birth defects, such as cleft lip and cleft palate. If you’re planning to get pregnant soon, begin taking a prenatal multivitamin now.
Don’t use tobacco or alcohol. Use of alcohol or tobacco during pregnancy increases the risk of having a baby with a cleft defect.
Coping and support
No one expects to have a baby with a birth defect. When the excitement of new life is met with the stress of discovering that your baby has a cleft lip or cleft palate, the experience can be emotionally demanding for the entire family.
a) For parents and family
Don’t blame yourself. Focus on supporting and helping your child.
Acknowledge your emotions. It’s completely normal to feel sad, overwhelmed and upset.
Find support. Your hospital social worker can help you find community and financial resources.
b) For the child
Focus on your child as a person, not on their cleft.
Point out positive attributes in others that don’t involve physical appearance.
Help your child gain confidence by allowing him or her to make decisions.
Encourage confident body language, such as smiling and holding his or her head up and shoulders back.