Dealing with clefting in children

The Jibrils awaited the delivery of their baby with excitement and joy. They had gone for a scan which showed it was a baby girl, and they had always prayed for one. But the excitement was shattered when the baby girl was born with a defect in her mouth. She was shortly diagnosed with both […]

The Jibrils awaited the delivery of their baby with excitement and joy. They had gone for a scan which showed it was a baby girl, and they had always prayed for one.

But the excitement was shattered when the baby girl was born with a defect in her mouth. She was shortly diagnosed with both cleft lip and palate.

When friends and relatives visited the family to congratulate them, the Jibrils always told them the baby was asleep. Some of the guests thought the baby was being hidden as a result of the coronavirus pandemic, but the shame of the defect made the parents keep the baby away from visitors.

A cleft palate (orofacial cleft) is a birth defect caused by the incomplete joining of the tissues that make up the roof of the mouth or palate. In some instances, a cleft palate is accompanied by a cleft lip, wherein the lip tissues also fail to join properly in development.

It’s estimated that over 2,600 babies are born with a cleft palate every year; and about 4,400 babies are born with a cleft lip with or without a cleft palate.

A cleft lip and cleft palate are facial and oral malformations that occur very early in pregnancy, while the baby is developing inside the mother. Clefting results when there is not enough tissue in the mouth or lip area, and the tissue that is available does not join together properly.

The Chief Consultant Pediatrician and Neonatologist, Asokoro District Hospital, Abuja, Dr Anthony Adetola, said cleft deformation could come with lots of complications and has been a major cause of concern to parents. He said it could happen during the cause of development of the fetus.

He said, they see cases of cleft a lot in children, adding that there are over 100,000 cases of cleft occurrence recorded annually in Nigeria.

Dr Adetola also said the defect is divided into two; cleft lip and cleft palate also known as orofacial. He said the palate is the roof of the mouth in which there are two parts to the root of the mouth; the soft and the hard part.

“So, when there is a gap in the roof of the mouth, it is called cleft palate and if that one exist alone it will not be noticed until the mouth of the baby is opened. But the cleft lip is an opening in the upper lip which can happen on both sides or on the upper lip. Cleft palate can exist alone, cleft lip can exist alone and both can also exist together,” he explained.

He said, although there is no detailed data in Nigeria, in the USA where it is recorded, cleft lip alone happens in 1-in-6000 births, and cleft palate one-in-2000 births and that both happens in one-in-1000 births.

Causes

The chief consultant, while explaining the causes, said most of the time the causes are not known but it could also come in the form of a genetic problem. There is what we call chromosomal syndrome that has cleft palate and lip associated with it such as Edward syndrome, Patau syndrome and others. It could also come as a result of familial syndrome. That is, if there is history in the family. It could be part of a syndrome that is a conglomerate of so many problems and malformation of the baby.

He said studies have also shown that mothers that have some kind of illnesses during pregnancy, such as diabetes, maternal obesity, exposure to some environmental chemical, smokers, mothers taking alcohol, mothers on medications such as anti-epileptic drugs, exposure to radiation when they don’t know they are pregnant and go through X-ray, and low level of folic acid can cause not only cleft but other congenital abnormalities.

This is because folic acid helps the cell to migrate and when there is no folic acid there is a problem.

Detection

He said it can be detected through screening, adding that is why they encourage every pregnant woman to go for fetal anomalies screening where they will check the baby and look for the structures as early as possible.

This is because cleft lip occurs early in the development, between the third and seventh week of life; sometimes even before the woman is even aware that she is pregnant.

Cleft palate happens between the sixth and ninth weeks of pregnancy, barely around two months. Some of them can be picked as early as two or three months of pregnancy but majority are picked at birth. We don’t need any sophisticated machine to pick it at birth but by just observing the baby you will see it.

According to the consultant, most people do not recognise cleft palate because it is inside the mouth but they only find out when the baby wants to suck, the milk could be coming out through the nose due to lack of roof. The absence of the roof of the mouth makes the child not to feed well, the child may be choking also. It is at this point most mothers bring the baby and we observe and discover the problem.

 Complications

Dr Adetola said the number one issue is cosmetic problems because cleft lip is present outside and people see them. If not corrected on time people abuse them, call them strange children, “ogbanje”; they may ostracize the family and it may cause a lot of psychological/emotional effect on the child.

Another complication is that the baby will have feeding problem, especially with the cleft palate. When they put mouth on the breast you find that they cannot suck well or swallow because food will come out of the mouth and in the process the baby can get aspirated. That is when food gets into the lung which can lead to recurrent pneumonia infection.

The baby could also have ear infection because there is a tissue that connects the ear to the throat (auditory tube) and the baby could also have hearing problem. Sufferers could also have speech problem such as speech delay.

Correction

The physician said early diagnosis will help and surgery is the best way to correct the anomalies.

He said: “There are lots of organisations, NGOs – we have Smile Train they are in Nigeria – that help people with cleft lip and palate.

“For cleft lip, it is corrected before the age of 12 months by experts called musculofascial surgeons. They perform the surgery and the child comes out fine with little or no scar.

“If it is cleft palate, it is done before the age of 18 months, they also close that gap through surgery.

But before the baby matures for the surgery, we normally manage their feeding by passing a tube through the nose to their stomach by feeding them and sometimes we use something to block that defect in the cleft so that they can feed. We manage their feeding, manage infection, and others and take them for surgery.”

Prevention

The consultant paediatrician advised pregnant mothers to go for antenatal regularly and avoid self-medication, avoid radiation, and go for fetal anomalies screening.

“Every pregnant woman should go for adequate antenatal screening, especially those that have a history of congenital problem. People should be enlightened not to throw away babies that have such defect.

“We must understand that it is a correctable defect and every child that undergoes surgery grows into a normal adult,” he stated.