By Zainab Sanni |
Aghast, Afraid and Acceptance. These were the emotions Kenneth Ihenacho felt in quick succession when he first saw his daughter after her birth. He would later learn that her face was disfigured because she had a condition called cleft.
When MAP NEWS correspondent met Ihenacho and his daughter at the corridors of Lagos University Teaching Hospital, LUTH paediatric centre; surgery had already been carried out to correct the condition. The devotion of the elder Iheanacho as a father was immediately obvious.
But finding a solution had cost the family hundreds of hospital visits, the death of another daughter and at least two million naira. It took the Iheanchos seven years of running around to find out about Smile Train, the organisation that eventually carried out a corrective surgery on their daughter at no cost.
Throughout this period, Kenneth Iheanacho who is a building contractor led his family’s search for a solution. When speaking with this reporter, he said “I know that children are from my God and my wife is not responsible for what happened to the child. It is my responsibility as a father to ensure that my family is okay. At some point even, my wife was discouraged but I told her to not lose hope and I was confident we would find a solution no matter what”.
This father of five, remaining devoted to his family and leading the search for a cure to his daughter’s condition could as well have been a regular story. Sadly, what obtains for most babies with cleft and their mothers is the exact opposite. Men are known to take to their heels, abandoning wife and child once the new-born is confirmed to have this condition. It is so common that health workers often prepare women for this possibility once they deliver a baby with cleft.
The CLEFT Blame Game
Smile Train, the world’s largest cleft-focused organisation notes that one in 700 babies are born with a cleft lip and/or palate globally. The organisation describes the condition as one that “occurs when certain body parts and structures do not fuse together during foetal development. Clefts can involve the lip and/or the roof of the mouth, which is made up of both hard and soft palate.”
Speaking with MAP NEWS, Dr. Igbinabio Micheal, plastic surgeon consultant and cleft expert at the University College Hospital, Ibadan notes that while there is a lack of accurate data about stigmatisation and emotional abuse of mothers in the treatment of cleft patients, it is a reoccurring issue.
“For cleft caregivers, it can be quite a challenge emotionally. For starters, we do not do enough anomaly scan for women to detect these things while they are pregnant. You can then imagine how much of a shock it is when they give birth to a deformed child. In my 11 years of practice, I have only had two cases where the mothers were aware that they would be having children with an anomaly.
“We might not have the data but are often able to decipher from the mother’s emotional state and when we ask where the father is, we then get to hear stories. Most of the time, it is the mothers who bring the children with cleft to clinic and the father is nowhere to be found.
“So you can imagine what it is like for a mother expecting a healthy baby and the it comes with an anomaly. It can be quite devastating. We have seen women just cry and cry then they now to deal with abandonment, fathers accusing the mothers of being at fault and in-laws also victimising the mother,” she said.
This was the case with Adeola Oloye who gave birth to twin children, both of whom had cleft. Her husband disappeared from the hospital once he saw the children, abandoned them with their mother when they came home and only came back into their lives after the corrective surgery had been carried out. Her in-laws also berated her for having children with cleft.
Adeola described the period as one of the most devastating of her life. “I know what my eyes saw with these children. I just had to accept my fate”.
Eunice Omorouyi, an estate surveyor has two children with cleft. For her first child who is now eleven years, she fondly recalls having a perfect pregnancy and working right up until the day she delivered. Hence, she was shocked when a baby with cleft was given to her.
“It was shocking really and up till now; I still don’t have an explanation for why my son has cleft. I however accepted it as the will of God as he will not let us be burdened beyond what we can bear. This was how I started my search for a solution, running from one hospital to another, dealing with stigmatisation and insults and still trying to care for the child despite how difficult it was. It wasn’t until my son was around 10 months that one of the doctors I had been in contact with at Lagos University Teaching Hospital, LUTH, told me about SMILE TRAIN’s free surgery services for patients with cleft.
“The process was financially draining but even worse than that was the lack of emotional support. It was as if I was the only one responsible for bringing this child to the world. They made it seem like it was my fault that the child had cleft.” She explained.
Eunice gave birth to her third child in 2018 and it was also a child with cleft. She says the stigmatisation was even worse this time. The mother of three who is now separated from her husband noted that everyone blamed for having a child with cleft and described it as wickedness.
She said, “My husband, his family, my family, neigbours and friends all blamed me for having a child with cleft. At a point, I had to ask ‘am I a witch?’. The mental torture cannot be put into words. I was not saying anyone should give me money to take care of these children. All I wanted was the support of my family but I am here, all alone and dealing with everything by myself. It is quite difficult but what can I do.”
With over eleven years’ experience as a surgeon, Dr. Igbinabio has seen a number of women go through this situation.
“I remember a case where the in-laws locked up the child in a room hoping the baby would die and the mother had to break in to rescue the child. Mothers often have to leave their location and run to another place pending when they get treatment for the child. They are always very anxious to get the surgery done so they can go back to town.
“We have had a couple come and the man was very upset with the wife. He kept insisting that she should say what she did or reveal where she went that resulted in the child. From the way he was talking, we suspected he may have cleft and asked that he should open his mouth. Lo and behold, he also had clef. Meanwhile, he had been blaming the mother yet it was a genetic issue from the father.”
Ending The Blame Culture
Eunice Omoruyi who is currently separated from her husband describes the stigmatisation and blaming of mothers with cleft children as wickedness. She says nothing else can explain the behaviour of family members, especially fathers towards the mother of a child with cleft.
The Lagos based estate surveyor said, “it is pure wickedness because the child is also yours so why blame the mother? What I went through is mentally draining and at a point, I almost left this child at the hospital because I was just fed up. I don’t wish that kind of mental torture on my worst enemy
“My husband was even up and doing when we had the first one but since I had this my third baby who also had cleft, there has been no support at all.”
Dr. Igbinabio however explains that the tendency to blame women for having children with cleft is as a result of ignorance and culture
“The women blaming, we often see stems from both culture and ignorance. Our culture is still steeped in a lot of superstition and it is from there that all the blaming would arise. Then again, there is a lot of ignorance about cleft and how it arises which also results to blaming the mother and stigmatisation
“So culture and ignorance about the issue plays such a big role in how many women are at the receiving end of these blame games,” she noted.
Iheanacho who continues to take the lead in ensuring his cdaughter gets the best cleft care says men and family members who heap the blame on women are immature and ignorant.
“Why should you blame the mother? Is it not also your child? I see it as nothing but immaturity and unwillingness to take responsibility. Fathers need to do better and show leadership example in every aspect of family life and you should know that there is a cure so it is not a death sentence.”
Dr. Igbinabio also urged stakeholders to take the lead in creating awareness and helping those who are ignorant understand that cleft is a non-threatening condition and can easily be corrected with surgery.
The plastic surgeon said “The society needs to desist from blaming women. We must understand that a child is the product of two people and no matter how the child turns out once it is born, the responsibility of that child is on both parents. No parent has the right to take up the blame game.
“It is also important that cleft care professionals increase the awareness across communities. Many of them do not know and the lack of knowledge drives their actions. It might take a while for these cultural issues to change but increased awareness would help address the stigmatisation. When people are more enlightened, they would no longer heap blames of child defects on the mothers.”
Share this
