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Mothers Of Newborns With Cleft Conditions Tell Emotional Stories Nursing Their Deformed Babies + Their Big HOPE In Restoring Their Appearance And Health

Mothers Of Newborns With Cleft Conditions Tell Emotional Stories Nursing Their Deformed Babies + Their Big HOPE In Restoring Their Appearance And Health

Cleft prevalence in Nigeria

According to a 2017 study published online by the Nigerian Journal of Clinical Practice, clefts of the lip and/or palate are the most common congenital craniofacial defects and second only to club foot among all congenital anomalies.

This survey carried out to ascertain the state of cleft management in Nigeria, with emphasis on training, the scope of management, and assessment of treatment outcome, noted that the management of the condition was resource-intensive due to the multidimensional needs of patients.

Also, according to WHO, cleft lip and/or palate, for example, occurs in approximately 1 per 500-700 births, the ratio varying considerably across geographic areas or ethnic groupings

One reason most pregnant women look forward to their day of delivery with excitement is because they are eager to meet the babies they’ve carried in their womb for nine months.

This excitement, however, usually quickly turns to disappointment and emotional agony when the baby is delivered and has a cleft lip and/or cleft palate.

Dealing with this disappointment and bonding with the baby is a major struggle for most mothers.

This is a challenge that Mrs. Gift Otore, a mom-of-4, residing in the Ikorodu area of Lagos, has had to deal with for the past five months.

Narrating her story, Mrs. Otore who delivered a baby boy with a cleft lip five months ago, said it’s been tough facing the challenge of nursing her son, named Success.

Speaking with PUNCH Healthwise in an exclusive interview, Mrs. Otore said,

“I was very sad when I first saw Success after giving birth to him. I did not even have the strength to face the challenge of nursing him.

“I delivered normally at F&F Hospital in Ijedodo, Ikorodu, and that’s the same hospital where I had my antenatal. However, when I saw the baby, I was very sad, rather than being happy.

“Even though the doctors told me the problem he has can be corrected, I was still sad and unhappy. It was very tough to accept and it is still tough now to deal with.

“This is my fifth child and the first four don’t have this condition. Although I lost my second child, all my previous children don’t have a cleft, so it is difficult to accept.”

Delayed antenatal  

Mrs. Otore, however, thinks her delay in commencing antenatal care could be responsible for her son’s cleft condition. She shared further:

“I was told this probably happened because I did not start antenatal on time. I started my antenatal when I was seven months pregnant. The reason was that it was not my first, second or third pregnancy. I felt I knew enough about managing my pregnancy, but I now know better.

“I am now receiving treatment for Success at the Oral and Maxillofacial Clinic of Lagos University Teaching Hospital and looking forward to the surgery that has been scheduled for him to correct the problem.

“Since I gave birth to him, I have been reluctant to take him outside because of his appearance. He was supposed to be dedicated in church but we haven’t done it yet because of the condition. I am just looking forward to having the surgery and hoping it will be successful. I am also grateful to the Smile Train NGO sponsoring the surgery.”

SEE ALSO: 5 Ways To Minimize Your Risk Of Having A Baby With Birth Defects

Cleft lip and cleft palate explained

According to a Professor of Oral and Maxillofacial Surgery at LUTH, Mobolanle Olugbemiga Ogunlewe, while the cause of cleft lip and cleft palate is still not fully understood, studies have shown that the abnormality is caused by an interaction between genetic and environmental factors.

Ogunlewe, a consultant maxillofacial surgeon, explained that while the genetic factors occur as the baby is being formed in the womb, the environmental factors are things the pregnant woman acquired or is exposed to.

“Those things may be the drug she takes, radiation, or infections she is exposed to while pregnant.

“So, a cleft usually occurs when there is an interaction between the genetic and environmental factors, particularly in the first six to seven weeks of pregnancy.

“This is because by the seventh week of pregnancy, the face is already formed and by the ninth week, the roof of the mouth is formed. So, a cleft usually happens in the early period of pregnancy,”

she said.

According to Mayo Clinic, cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both.

Cleft lip and cleft palate, it says, result when facial structures that are developing in an unborn baby don’t close completely. Mayo Clinic noted that cleft lip and cleft palate are among the most common birth defects.

“They most commonly occur as isolated birth defects but are also associated with many inherited genetic conditions or syndromes. Having a baby born with a cleft can be upsetting, but the cleft lip and cleft palate can be corrected. In most babies, a series of surgeries can restore normal function and achieve a more normal appearance with minimal scarring,”

it said.

Reason for my daughter’s cleft still unclear   

However, for Mrs. Adeola Sadiq, a mother of a three-month-old girl, Amirah Sadiq, the cause of her daughter’s cleft condition is still a mystery.

“I delivered my baby at the General Hospital, Isolo. Amirah is my second child and my first daughter did not have this condition. I felt very bad when I saw how she looked after delivery. I was so unhappy.

I started my antenatal when I was three months pregnant and took all my medications, as prescribed, till I delivered. So, I don’t know why this happened.

I asked the doctors and they told me this condition can happen without a clear reason.

I gave birth on November 3 and I have been coming to LUTH since November 4 for treatment in preparation for surgery. I was assured surgery would help restore my daughter’s looks and I am looking forward to it.

I have accepted my daughter as a gift from God and I am taking care of her with the support of my husband. I am happy she has no other health problem. She eats well.

I was given a special feeding bottle for her feeding and it has made feeding her easier. I was told an NGO, Smile Train, is sponsoring the treatment and surgery and I am grateful to them.”

Why bonding is difficult for mothers

According to Prof. Ogunlewe, the reason most mothers who deliver babies with cleft find it difficult to bond quickly is because they are usually shocked by the looks of their babies after delivery.

“Most parents, look forward to giving birth to a healthy child, but when the baby is delivered and has cleft lip or palate, they are usually unhappy and thus find it difficult to bond with the child.

“So, the first thing is that mothers must overcome this emotional challenge and show love to the child. It is not the fault of the child that she has come out like that,”

she said.

Surgery as solution for cleft

However, for Mrs. Favour Itodo, mother of a one-year-and-six-month old girl, Devine Itodo, with a cleft lip and a cleft palate, cleft lip surgery has been a great help.

Narrating her story, Mrs. Itodo said that the first surgery conducted to correct the cleft lip of her daughter instantly transformed her face and made her look better.

“Devine is my first daughter and I gave birth to her at the General Hospital, Isolo. It was tough to take when I saw how she looked after delivery. I was, however, encouraged by the assurance that it can be corrected with surgery.

“Devine has already had one surgery for the cleft lip and she is already looking far better.

“I am waiting for the second surgery which is for the palate. I was told she could have a third surgery to properly restore her looks. I am hopeful the surgeries will be successful,”

she said.

Mrs. Itodo, however, disagreed with what she was told could be the reason for her daughter’s cleft.

Folic acid and cleft lip and palate

“I was told by doctors at the General hospital, Isolo, that the reason for the cleft was because I did not take enough folic acid but I refuse to agree. I took all my medications during antenatal, including folic acid, so I don’t think it was the reason.

“The only thing I could remember was that about six months into my pregnancy, I had a disturbing cough and I bought Piriton and used it to treat it.

“The chemist who sold it to me said it was okay for me to use it since the pregnancy was already six months.

“The drug was not prescribed for me and I did not think it was necessary to tell them at an antenatal session about it,”

she said.

However, a study published by the British Journal of General Practice confirmed that folic acid supplements play a significant role in preventing cleft lip and cleft palate when taken in the first 12 weeks of pregnancy.

The cohort study concluded that healthcare practitioners should be made aware of the growing benefits of folic acid and reinforce the importance of folic acid supplement education as part of prenatal counselling.

“This information is particularly pertinent to GPs as they are usually the first point of contact for women who are trying to conceive or in the very early stages of pregnancy.

“These findings suggest that folic acid plays a major role in preventing a major birth defect. It also offers established protection against neural tube defects,”

the study said.

SEE ALSO: 10 Folate-Rich Foods You Should Eat For A Healthy Pregnancy

A Chief Nursing Officer at LUTH,  corroborated the link between lack of folic acid and cleft lip and cleft palate.

Mrs. Odekunle told our correspondent that many patients with cleft conditions reported not taking enough folic acid.

“Nearly all my patients with cleft lip and palate confirmed that they did not take at all or did not take enough folic acid.

“So, inadequate folic acid, especially in the early period of pregnancy, has been identified as a factor for the condition,”

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she said.

Prof. Ogunlewe, however, said it is particularly risky for a pregnant woman to take drugs that are not prescribed.

“This is why I always advise that, in pregnancy, do not take any drug that is not prescribed by a physician. Even if you are sick, see a doctor to get a medication prescribed for you.

“Cleft, as I said, usually happens within the first ten weeks of pregnancy. This is why I always say that as soon as you know you are pregnant, be careful with what you take,”

Ogunlewe said.

Why babies with cleft are prone to respiratory infection

Mrs. Odekunle also explained that babies with cleft lip and cleft palate are more prone to upper respiratory infection because there is easy communication between the mouth, nose and airways.

“This is common because the babies tend to regurgitate food into the lungs because the barrier, which is the roof of the mouth, is not there,”

she said.

My daughter has done three surgeries –Mrs. Ajose

Also sharing her experience, Mrs. Omowunmi Ajose, mother of a 14-year-old girl, Esther Oluwaferanmi Ajose, said surgeries have helped restore her daughter’s appearance and health.

“When I gave birth to Esther, 14 years ago, it was very difficult for me. I was always crying, even though they told me there was a solution.

“I gave birth to her at a private hospital in Meiran area of Lagos and even now it is still difficult to describe how I felt on seeing her. It was tough. I was crying every day.

“I was referred to General Hospital Ikeja, but I didn’t get much help there.

“I later took her to a General Hospital in Ibadan, after discussion with one of my sisters who is a nurse working there

“It was at the hospital that they did the first surgery, but I couldn’t continue the follow-up because of the distance.

“I later learnt from a neighbour that the treatment was available at LUTH and that the surgery is even free. I couldn’t believe it.

“But, it is true. They have done three free surgeries for my daughter. The first one was to correct the surgery done in Ibadan because it was not done properly. After that, she has had two other main surgeries.

“Beyond that, they’ve been following up on her to know how she is faring.

“I learnt the treatment and surgeries at LUTH are sponsored by the Smile Train NGO and I’m so grateful to them. They have made me a happy mother,”

she said.

Cleft surgery

Prof. Ogunlewe explained that cleft lip surgery is usually done after three months of delivery.

“This is because we want the baby to have adequate weight. During the three months before the surgery, the baby is monitored and examined by other specialists to ensure she doesn’t have any other congenital abnormality and we build the baby up to the right weight for the surgery.

“We also do the cleft lip surgery early to give parents confidence about the process and more emotional connection to how their baby looks.

“However, palate surgery is done after one year, before the baby starts to talk,”

she said.

Free surgery to the rescue

According to Prof. Ogunlewe, while cleft surgeries were being carried out in Nigeria before the partnership with Smile Train, the collaboration with Smile Train has, however, made comprehensive cleft care possible.

“With the Smile Train partnership with LUTH, we are now undertaking comprehensive cleft care. We even provide nutrition for patients who need it

“I know that Smile Train has partnered with over 55 care centres across the country, not only with LUTH. So, there is better access to cleft care in the country,”

she said.

 

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