When Irene Nyabeni was pregnant with her third child, little did she know that she would not go through the same joy that came with the birth of her first two children. The birth of Mercy Athieno brought more pain to her than what she had expected, after the child was diagnosed with a cleft lip and cleft palate in 2012.
What is cleft lip?
Dr George Galiwango, a plastic and reconstructive surgeon at Comprehensive-Rehabilitation-Services in Uganda (CoRSU), defines cleft as a physical split (gap or opening) on the lip or palate and it usually extends beyond the base of the nose to include the bones of the upper jaw or gum. Clefting occurs early in pregnancy, while the baby is developing in the womb, and is associated with lack of tissue in the mouth or lip area to join the two sides together.
Cleft lip and cleft palate can occur on one or both sides of the mouth. Because the lip and the palate develop separately, it is also possible to have a cleft lip without a cleft palate, or a cleft palate without a cleft lip. “Less commonly, a cleft occurs only in the muscles of the soft palate (submucous cleft palate), which are at the back of the mouth and covered by the mouth’s lining,” explains Dr Galiwango. He says this type of cleft often goes unnoticed at birth, and may not be diagnosed until later when signs such as difficulty in swallowing, nasal speaking voice and recurring ear infections develop.
“I was shocked when I first saw my baby with a split lip revealing a palate. I feared that Mercy would have to live like that for the rest of her life. But fortunately, a nurse from the hospital in Mbale where I gave birth assured me that the condition could be corrected and Athieno would have normal lips again,” Nyabeni narrates, adding, “It scared me. I had never seen anyone with such a condition before.”
Nyabeni gave birth to her other two children from home, and did not bother to attend antenatal services when she was pregnant with Athieno. “I thought all would be fine since I have never had any difficulties with the other children,” she says.
Like it is usually the case for many mothers who have children with disabilities, Nyabeni’s husband found it hard to accept Athieno and her condition, and instead blamed his wife for what had happened to the child. “My husband accused me of bringing a curse to the family by giving birth to a deformed child. But I stood strong, went to church and prayed about it,” Nyabeni says.
Unfortunately for Nyabeni, the people in her community also pointed accusing fingers at her, saying she could have angered or insulted a person with disability while she was pregnant, and that the curse had returned to haunt her. When the baby was about four months old, Nyabeni was introduced to CoRSU, through a doctor from Tororo hospital.
CoRSU, which is located in Kisubi along Entebbe Road is a rehabilitation centre that offers orthopaedic and plastic surgery services, though it tends to treat more conditions such as clubfoot, cleft lip and palate, knock knees, post burn contractures and post injection paralysis (PIP) among other services.
Before the surgery
At CoRSU, Athieno was started on a nutrition diet that would keep her nourished and healthy before surgery could be undertaken. “Athieno’s mother did not have enough breast milk, so we had to supplement the little she had with cow milk. We did not want to risk her health, lest she became malnourished,” says Lorna Namuswa, a nutritionist at CoRSU.
She adds: “The child responded well to the milk supplement, and within a short time, she was ready for her first surgery, which was carried out in August 2012, when Athieno was four months old.”
After she recovered, the second surgery was carried out in 2013.
It was the happiest moment for Nyabeni, who believed that if her daughter had grown up with the deformity, she would face several challenges including the risk of malnutrition, infections, speech difficulty, or even rejection from the community. “It has been over a year now since my daughter was operated and she now feeds well. I no longer get people staring at her,” she says.
Nyabeni admits all the fear she had about what her child’s life and future would turn out to be has been replaced with hope and good dreams. According to Dr Galiwango, any parent can pass on genes that cause clefting, either as an isolated defect or as part of a syndrome that includes clefting as one of its signs.
Challenges with cleft lip
Dr Galiwango says children with cleft lip and cleft palate face a variety of challenges, depending on the type and severity of their cleft.
One of the immediate concerns after a mother has given birth is often how to feed their babies and keep them healthy. While most babies with cleft lip can breastfeed, a cleft palate can make suckling difficult or cause gagging or breast milk to come out through the nose. Dr Galiwango advises mothers to consult a nutritionist, who can offer guidance on how they can feed babies who have cleft lip deformities.
Ear infections and hearing loss
Babies with cleft palate are susceptible to middle ear infections and over time, repeated ear infections increase the risk of hearing loss.
A cleft lip or palate can affect tooth development, though this can be corrected as the child grows.
Because the palate is used in forming sound, the development of normal speech is affected by a cleft palate. However, repair and speech therapy can improve this, if medical care is sought early enough.
Children with clefts may face social, emotional and behavioural problems, due to differences in appearance and the stress of intensive medical care. A doctor, psychologist and or social worker can help you and your child find ways to cope with the stress your family encounters.
After a baby is born with a cleft, parents are understandably concerned about the possibility of having another child with the same condition. Dr Galiwango advises expectant mothers not to use tobacco or alcohol and to take prenatal vitamins before conceiving and during pregnancy. This, he says reduces the risk of having a child born with cleft lip and cleft palate.
Quick notes on cleft lip defects
Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly. They happen early during pregnancy. A physical examination of the mouth, nose, and palate confirms a cleft lip or cleft palate. Medical tests may be done to rule out other possible health conditions.
•A baby can have a cleft lip, a cleft palate, or both.
•A cleft lip happens if the tissue that makes up the lip does not join completely before birth. This causes an opening in the upper lip. The opening can be a small slit or a large opening that goes through the lip into the nose. It can be on one or both sides of the lip or, rarely, in the middle of the lip.
•Children with a cleft lip also can have a cleft palate. The roof of the mouth is called the palate.
•With a cleft palate, the tissue that makes up the roof of the mouth does not join correctly. Babies may have both the front and back parts of the palate open, or they may have only one part open.
•Children with a cleft lip or a cleft palate often have problems with feeding and talking. They also might have ear infections, hearing loss, and problems with their teeth.
•Often, surgery can close the lip and palate. Cleft lip surgery is usually done before age 12 months, and cleft palate surgery is done before 18 months.
•Many children have other complications. They may need additional surgeries, dental and orthodontic care, and speech therapy as they get older.
•With treatment, most children with clefts do well and lead a healthy life.
•Most babies will heal without problems. How your child will look after healing depends on the severity of the defect.
•Your child might need another surgery to fix the scar from the surgery wound.
•Hearing problems are common in children with cleft lip or palate. Your child should have a hearing test early on, and it should be repeated over time.
•Your child may still have problems with speech after the surgery. This is caused by muscle problems in the palate. Speech therapy will also help your child.
After the procedure
•Your child will be in the hospital for an estimated five to seven days, right after surgery. Complete recovery can take up to four weeks.
•The surgery wound must be kept clean as it heals. It must not be stretched or have any pressure put on it for three to four weeks.
•The health worker will show you how to take care of the wound. You will need to clean it with soap and water or a special cleaning liquid, and keep it moist with ointment.
•Until the wound heals, your child will be on a liquid diet. Your child will probably have to wear arm cuffs or splints to prevent picking at the wound. It is also important that a child with cleft lip who has had surgery does not put their hands or toys in the mouth.
Compiled from MedlinePlus