Birth defects are a leading cause of death for infants during the first year of life. They are structural or functional abnormalities present at birth that cause physical or mental disability.
In the case of Spina Bifida also called ‘Split Spine’, the defect occurs when the spine and spinal cord don’t form properly. It is a type of neural tube defect that occurs when a baby’s spine and spinal cord do not develop properly in the womb, causing a gap in the spine.
Nigerian mothers whose children live with spina bifida tell PUNCH the challenges of raising children with the birth defect.
When Mrs. Agatha Kadiri, 58, was pregnant with her fourth child, Daniel, she was hale and hearty. She was 35 years old then.
By the eighth month, Agatha started feeling pain in the lower abdomen and after medical examination, the doctor found out that the baby would be a breech birth.
She was thereafter sent for a scan, which further showed that the baby in her womb had water in his brain.
After much anxiety, Agatha said, she was lucky to have had vaginal delivery two weeks after the scan, though she was unaware that her baby had been born with a major birth defect that has made him unable to walk.
The Edo State indigene said she was shocked when her son was diagnosed with spina bifida shortly after birth, being the first time she would hear the medical term, wondering what could be the cause.
Sharing her experience, Agatha said,
“Daniel is my fourth child and I gave birth to him in 1998. I gave birth to him vaginally without any complications. But I noticed something strange about the attitude of the nurses towards him after his delivery.
“I delivered him at a private hospital in Ilasamaja, Lagos. I noticed that when they were taking the baby out of the delivery room, one of the nurses asked her colleague, ‘What is this on his back?’ And the colleague replied, ‘Shut up.’
“I didn’t know what they noticed on the baby. Later, when I checked him, I noticed that he had bandage on his back. So, I thought it was an ordinary wound. The next day, they gave me a referral letter to the Lagos University Teaching Hospital, Idi-Araba.
“Instead of taking the baby to LUTH, I took him home, thinking that it was an ordinary wound that we could treat at home. But when one of my neighbours came to bathe him, she removed the bandage and told me that from what she saw, it was not a condition that could be treated at home.”
The secondary school teacher said Daniel was thereafter taken to LUTH. She continued,
“When we got there, he was admitted to the neuro-clinic. He was given all kinds of treatment. The neurosurgeon said that my child had spina bifida. I was shocked and confused because I have never heard of such before and have never seen anyone with spina bifida.
“The neurosurgeon told me that spina bifida is an abnormal growth in the spinal cord and that my son would require surgery. He had the surgery at three months old.”
About 90% of babies with spina bifida develop hydrocephalus —WHO
According to the World Health Organisation, spina bifida is a congenital anomaly (birth defect) in which the spinal column does not develop normally during the first weeks of pregnancy.
This, WHO says, causes permanent damage to the spinal cord and the nervous system, and can result in paralysis of the lower limbs or problems with bowel and bladder function.
“About 80-90 percent of babies with spina bifida also develop hydrocephalus, a condition that causes fluid to build up inside the head, causing pressure to increase and the skull to expand to a larger than normal size. It can also cause convulsions, tunnel vision, mental disability or death.”
The UN agency says the risk of neural tube defects such as spina bifida can be reduced by up to 70 percent if the mother takes adequate amounts of folic acid every day before becoming pregnant. Decrying the situation, Agatha said,
“I thought that after the surgery, everything would be normal and he would be able to walk. I never knew he was going to be on a wheelchair for life.
“I brought a physiotherapist to my house to massage the bone, but all to no avail. I thought it was polio. I never knew that a child could be born with a defect that will make him unable to walk for life, despite treatment.
“After I realised that he was not going to walk, my husband and I took up the challenge to nurture him and give him our support. Thank God, he is doing well. He is 100 Level Business Administration student at the Lagos State Polytechnic.”
Daniel, 23, who smiled radiantly during an interview with PUNCH, said he had an unwavering spirit and will not allow spina bifida to limit his ambition of becoming a great administrator.
“I have male and female friends. My friends relate well with me. My teachers relate with me. I enjoy reading and when I graduate, I will look for a good job and also a wife to spend the rest of my life with,”
Many parents unaware of spina bifida
Another mother with similar experience is Mrs. Bilikis Yusuf whose 14-year-old daughter, Alia, has not been able to walk despite receiving treatment at the Lagos State University Teaching Hospital, Ikeja and the National Orthopaedic Hospital, Igbobi, Lagos.
The businesswoman who hails from Kwara State told our correspondent that she had issues giving birth to Alia, unlike her experience while pregnant with her first child. Bilkis narrated,
“Alia is my second child; she uses a wheelchair. I had no issues with my first delivery. But giving birth to Alia was difficult. I was in labour for three days, though, I had her vaginally.
“When I gave birth to her in 2007 in a private hospital, I saw something on her back. So, I took her to Ikorodu General Hospital four days after her delivery.
“When we got there, we were referred to LASUTH and she was booked for surgery. The doctor told me that she had spina bifida. I asked the doctor what it meant because I was not aware of the condition.
“The doctor told me that I did not take enough folic acid during my pregnancy and that, that was what caused it.”
“So, the operation was done after a month of her delivery and I thought the problem was over. But after the surgery and various types of treatment given to her, she is still in a wheelchair.
“We were asked to go to Igbobi for the Plaster of Paris. After all the visits, she is still not able to walk. They said her own is a major one and that it affected her bladder. We will continue to give her our support.”
Other mothers who spoke with PUNCH shared similar experiences, saying they were not aware of such a birth defect that could paralyse a child for life until they gave birth to babies with the condition.
But that of Victor Odusola, a 14-year-old orphan, appears more pathetic. Victor, who lives with his mother’s younger sister at Makoko area of Lagos, lost both parents in 2019 and 2020 respectively.
Narrating Victor’s ordeal, his aunt, Olabimpe Jedo, said that the young man was taken to various hospitals by his late parents, all to no avail.
“He has been treated in LUTH and Igbobi, he is still not able to walk. At one point, his late mother took him to a native doctor. She did a lot for him to walk when she was alive, still the story is the same.
“The most worrisome is that he has complications. He has wounds on his legs and back for some years now that have refused to heal despite treatment. We are now managing it at home. It has not been easy managing the condition with the wound,”
‘Surgery is for infection prevention, not to make patients walk’
Speaking with PUNCH, a Consultant Neurosurgeon at the University of Ilorin Teaching Hospital, Kwara State, Dr. Nurudeen Adeleke, said that the development of spina bifida is as a result of the poor formation of the spinal cord, which usually occurs within the first three weeks of pregnancy.
Adeleke said the essence of surgery for children with spina bifida is not really to make them walk but, rather, to make their back look normal and to prevent infections of the central nervous system.
He, however, said that some people with spina bifida can still walk, but that it will only depend on the level of the abnormality.
On the Risk factors for spina bifida, the neurosurgeon explained,
“We don’t really know what is the cause of spina bifida, but we have risk factors.
“One of the risk factors is lack of folic acid in food. Folic acid deficiency in a pregnant woman can lead to giving birth to a child with spina bifida.
“If the spinal cord is not properly formed, that means the function it serves will be affected. Now, whether they operate it or not, that would not affect whether the child is going to walk or not.
“What leads to whether the patient can walk or not depends on how low that spina bifida is. If it is a low spina bifida that is very close to the lowest part of the spinal cord, the child may still be able to walk.
“But if it is higher up, it will affect the function of the lower limb and, therefore, that kind of child will not be able to walk, even after surgery.”
On complications associated with spina bifida, Adeleke said,
“Some patients develop hydrocephalus. We have to prevent them from developing hydrocephalus in order not to affect their brain and for them to achieve their full potential.
“They need adequate care and some of them may require walking aids. Some of them may not be able to control their bladder and bowel.
“Spinal cord controls sensation. So, keeping a child in a particular spot exposes the child to risk of developing soreness.”
He urged pregnant women to take enough folic acid to prevent spina bifida.
The Centres for Disease Control and Prevention urges all women of reproductive age to take 400 micrograms (mcg) of folic acid each day, in addition to consuming food with folate from a varied diet, to help prevent some major birth defects of the baby’s brain (anencephaly) and spine (spina bifida).
Dangers of poor nutrition in pregnancy
Also speaking, the President, Federation of African Nutrition Societies, Prof. Ngozi Nnam, stated that inadequate nutrition in pregnancy leads to poor brain development of babies.
Nnam, a professor of Community and Public Health Nutrition at the University of Nigeria, Nsukka, says a pregnant woman is supposed to feed well and have adequate diets at all times for optimal development of the foetus.
Highlighting the dangers of poor nutrition in pregnancy, Nnam warns,
“Poor nutrition will cause inadequate development of the baby because nutrients are required for cells of the foetus to develop properly.
“Nutrient such as iron are very important in the development of the cells.
“When a pregnant woman stops taking foods rich in iron, she will be deficient in iron and that deficiency will affect the foetus and the cells will not form properly and this will lead to malformation when the baby is born.”
Speaking with PUNCH, Executive Director, Festus Fajemilo Foundation, Mr. Afolabi Fajemilo, said awareness about spina bifida is still generally low in Nigeria, as people still attach profound cultural and spiritual stigmas to the condition.
Noting that there is no available data on the number of people living with spina bifida in the country, Fajemilo said,
“The fact remains that many of the cases don’t get to the hospital and so are not recorded. Also, there’s no national registry for children with this condition in the country.”
He urged parents with children living with spina bifida to seek help from appropriate quarters and not to allow people to take advantage of their children to swindle them.