Mummy, why can’t I wee wee (urinate) like other children?, the question a 2-year-old keep asking his mother, who keep telling him that he would be alright…This story will melt your heart!
2-year-old Divine Chizuruoke Emmanuel who reside in Enugu with his parents, is not a normal boy. He suffers from a rare birth defect known as epispadias, which is associated with complete bladder exstrophy, meaning that his genital organs are malformed, and the bladder is exposed, outside the body.
The boy cannot urinate as his urine flows freely from the exposed bladder, a condition which has forced him to continue wearing diapers at an age when most of his mates have outgrown the protective wear.
Divine’s condition is not noticeable when he is dressed up as the clothes cover the malformed genitals and exposed bladder. It is only when his clothes are removed that one gets to observe the defects, which followed him from birth.
According to the John Hopkins Medicine Health Library, epispadias is a rare birth defect located at the opening of the urethra. “In this condition, the urethra does not develop into a full tube, and the urine exits the body from an abnormal location. In boys with epispadias, the urethra generally opens on the top or side of the penis rather than the tip”.
While the causes of epispadias are unknown, it is believed that it may be related to improper development of the pubic bone.
John Hopkins Medicine Health Library adds that epispadias can be associated with bladder exstrophy, “an uncommon birth defect in which the bladder is inside out and sticks through the abdominal wall”.
Epispadias can also occur with other defects. Research findings state that epispadias occurs in one in 117,000 newborn boys and one in 484,000 newborn girls. The condition is usually diagnosed at birth or shortly thereafter.
However, while the condition must be unnerving for any parent whose child is diagnosed with the problem, it could be repaired through a surgical procedure.
John Hopkins Medicine Health Library stated that “surgical repair of epispadias is recommended in patients with more than a mild case”. “Leakage of urine (incontinence) is not uncommon and may require a second operation. Surgery generally leads to the ability to control the flow of urine and a good cosmetic outcome.”
Considering the huge challenges posed by epispadias, it was easy to understand that Divine’s condition had taken a heavy toll on his parents, who have been battling to raise funds for four surgeries that their son has to undergo at the University of Nigeria Teaching Hospital, Ituku-Ozala, Enugu, in order to rectify the problem.
For Grace, Divine’s mother, it has been a traumatic experience, the joy of motherhood had turned to shock and despair when she set eyes on her son for the first time after giving birth to him about two years ago.
Since then, she and her husband, Joseph, have invested all their material, mental and spiritual resources into the quest to get healing for their son.
But for Grace, a private school teacher, and the husband, Joseph, a graduate who currently works as a taxi driver, the resources required to facilitate Divine’s surgeries are sadly not available.
The couple, who hail from Nkanu East Local Government Area of Enugu State, are determined to ensure that their son becomes a normal boy. But their determination is being undermined by lack of funds.
In an emotion-laden tone, Grace told our correspondent how she felt when she discovered Divine’s condition, shortly after giving birth to him at the hospital.
She said, “I was depressed because I had never seen such a case before, but it was the doctor that encouraged me and made me believe that there is hope. He (doctor) had to show me other cases involving other children so I had to console myself that my son is not the only one going through such things.
“The doctor explained that it occurs at a rate of about one in a thousand births, and at the time I was asking ‘Why me?’ since it occurs just once in a while.
“But I have accepted my fate, maybe God knows why he allowed it. The only thing I am asking God for is the money to pay for all the surgeries. I believe he will be okay.”
For Joseph, the father, the discovery of his son’s condition came to him as a shock. He said, “This is something I have never imagined or witnessed before in my whole life – I have not even heard of a case like this before now.
“But we are struggling to make sure he undergoes the surgeries and become normal. I have run into debt because of this problem, and the most depressing aspect of the whole issue is, it is not only one surgery that is needed, but four different surgeries.”
Grace explained that Divine had to undergo surgery almost immediately after birth.
“The doctors said he was going to undergo four surgeries – he has undergone two now. He went for one immediately he was born but that one later failed after we stayed in the hospital (UNTH) for about two months. The first surgery was when he was just a week-old, and the doctors told us that it is not always successful all the time.
“They later booked the second operation which was for hernia, that one was successful, so presently, they want to repeat the first one that failed, after which they continue with the remaining two surgeries.”
While he awaits the corrective surgeries, Divine has started school, and, apart from occasions when he experiences severe pain due to bleeding from the exposed bladder, he has been a healthy child.
But his parents are getting increasingly worried that he is getting ‘too old’ for the surgeries, which the doctors advised are best done at an infant age. The parents are also worried that, as he is getting older, he is becoming conscious of how different he is from other kids.
It has been a tough time for the young family since the birth of Divine, their second child. The first child was a girl, who was not born with any defects.
Grace explained, “It has been very tough honestly, we have spent everything we have. Even the piggery farm we started before we gave birth to him, we had to sell it off to raise money for his treatment.
“The little nursery school I started, because I am a teacher, I had to sell it to someone else in order to raise capital for his surgery.
“We have denied ourselves a lot of things and we will even sell more if we have other assets that we can sell, because we are determined to ensure that he gets healed and become a normal kid like others.
“He is already due for the next surgery but the problem is we don’t have money to pay for it. The doctors said each of the four surgeries will cost about N700,000. We were told that he is supposed to have finished the four surgeries by now, the doctors say it is getting late.”
The couple’s sad situation is compounded by rejection by family members. Grace and Joseph both admitted that close relatives have not been supportive.
Grace was particularly sad when she recalled how her mother-in law, Joseph’s mother, told her that she gave birth to a problem.
She said, “They (family members) are avoiding him (Divine), they believe it is our cross, that we should carry it. A lot of people have said things about his condition to make us feel bad, like somebody told me that I gave birth to a problem.
“In fact, it was my mother-in-law that told me that – she said I gave birth to a problem in her family. The day she told me that, I really cried because it pained me that my son is now a problem. The truth is she has enough to assist us to a reasonable extent but everybody left everything to us – they say it is me and my husband’s fault, that we know what we did that brought the calamity upon us and so we should bear the burden.
“They (family members) don’t assist us – they don’t even call us or ask after him or try to know how we are coping or what we are doing about him.”
Grace noted that the apathy might not be unconnected to objections raised by Joseph’s immediate family when they wanted to get married in 2011.
“The problem is they did not fully support our marriage. When we wanted to get married, they were not happy – they felt we were fresh graduates and should not be thinking of marriage at that time. But we insisted on settling down,” Grace explained.
Joseph said he feels bad because of the attitude of his family members.
He said, “I feel bad but I have to take this it as my own fate. Every family has its own issues so I’m taking it as one of those things, maybe it is due to the way they understand things. I am not angry with them.
“I have tried to explain the situation to them but they did not give me a listening ear. The problem is compounded by the fact that they are based in the North, Minna in Niger State, while we are here in Enugu.
“They know about his condition, they have seen him because they visit home (Enugu) from time to time. Initially they avoided him, but it was only recently that they came close enough to touch or carry him.
“Since God allowed this to happen to us, we pray and believe He will also give us the grace to overcome.”
They are appealing to public spirited individuals for assistance. Grace further explained that they wrote a letter to Enugu State governor, Ifeanyi Ugwuanyi, seeking his help in raising money for the outstanding surgeries.
The couple said they are still hopeful, noting that an unknown Good Samaritan had cleared outstanding bills incurred after the initial surgery at UNTH.