From Government ampaign encouraging women to take supplients containing folic acid, one may wonder what all the hullabaloo is about. We talk about people who are living through hell because a mother lacked the nutrient during pregnancy.
Throughout his life, Eric Marandu has watched in bewilderment as his peers walked and went about life using their legs with ease. Though he was born with a functional pair, Eric has lived without the ability to walk; all because of a small lump in his lower back that he emerged with from the womb.
“When he was born, he looked and appeared just fine. The only unusual thing was a small tuft of flesh that increased in size as time went by. We took him to Kenyatta National Hospital (KNH) to check if the growth was dangerous and that is when the doctor explained the ailment,” says Helen Wairimu, a distraught mother who can only watch as her son lives tethered to a tricycle wheelchair.
At age 28, Eric has no idea how to write A, B, C; neither can he perform basic kindergarten arithmetic. The first day he was taken to school, tragedy struck as he suddenly fell ill and had to be rushed to hospital. His father, Boniface Nderitu, has no recollection of a time, at any particular moment, that his son wasn’t battling an illness.
“He has never been to school,” says Boniface. “He is always being admitted to hospital. At KNH, the doctors cut off the growth around the lower vertebrae when he was just one year and three months. From that point, a year hardly goes by before some complication arises and he has to be admitted.” This constant hospitalization denied Erick the chance to ever learn.
It is now two years since Eric was last in hospital – at PCEA Thogoto Hospital in Kikuyu where he presented with infection. The whole ordeal, Eric says, is an implosion that changed his life even before his first breath.
Elaborately inscribed on his diagnosis (written 26 years ago) are the words ‘Spina Bifida’, a condition doctors pin on low amounts of folic acid in the early weeks of pregnancy.
“Low levels (or absence) of folic acid have been positively correlated with the occurrence of spina bifida,” says Dr. Stephen Mutiso, an Obstetrics and Gynecology specialist at Kenyatta National Hospital.
“Ideally, a woman should start preparing for pregnancy by ensuring that they have enough folic acid in their blood stream because the developments of neurological functions occur within the first 12 weeks of pregnancy – the period when folic acid is crucial for the closing up of the spinal column and the surrounding vertebrae,” he says.
As it turns out, folic acid – also known as Vitamin B9 – is the cog in the wheel that runs through as the spine is formed. Invisible to the human eye and obscured from the common understanding of man, folic acid provides the sort of balance a foetus needs to seal off the spinal column, acquiring the ability to control lower limbs and organs.
Unfortunately, the magic bullet that is folic acid has time constraints; it has to be taken early enough during pregnancy. Collective ignorance on the part of the society may be our own undoing. The problem with our lifestyle, argues Mutiso, is that pregnancy is rarely planned.
Juliana Auma, a mother of two, knows only too well how the righteous eye of the society can affect the health of a young mother and the foetus. She conceived while in high school as a teenager. Young, ashamed and jittery, she contemplated a myriad of actions; including abortion or hiding away from the public spotlight.
Her time to hide was no more when she fell ill and had to be hospitalised. Even though her disappointed father bit the bullet and agreed to support her through pregnancy, the damage was already done – at least on her daughter Phoebe Achieng’.
Phoebe, currently 20, developed both spina bifida and hydrocephalus.
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“Two months had elapsed when nurses first discovered that I was expectant. However, I was only given folic acid supplements at six months of pregnancy. I am not sure if the nurses themselves knew the importance of folic acid in the first months of pregnancy,” says Juliana, who currently works with a community based organization in Kijabe to educate women on the importance of folic acid in foetal development.
At the time of her daughter’s birth, Juliana didn’t think of the wound on her baby’s back as anything serious. “I thought of it as a wound like any other. I knew she would recover in no time. I was, however, shocked to know that she would never walk or control her bowels.”
Once bitten twice shy. Juliana conceived again – her son Joshua – four years ago. She made sure her blood stream flowed with enough folic acid molecules.
Children born with spina bifida live the whole of their lives with the condition. Dr. Doris Kinuthia, a pediatrician at Aga Khan University Hospital in Nairobi, says that surgery done on children born with the disease aims at closing the defect to minimize the risk of infection or further trauma within the first few days of life. Total healing still remains a mirage.
The most recent statistics contained in the Kenya National Demographics Health Survey (KDHS 2010) don’t contain specific information on folic acid supplementations to newly pregnant women. However, 54 per cent of pregnant women reported taking iron tablets or syrup.
The Ministry of Health recommends combined iron and folic acid supplementation for pregnant mothers from conception to delivery. Thirty one per cent of subjects in the 2010 survey admitted to never using any iron supplements during pregnancy.
Bethany Kids, a humanitarian organization working in conjunction with Kijabe Hospital, has so far conducted corrective operations on 9,787 babies born with spina bifida and 3,250 born with hydrocephalus.
“The vitamin is essential for our bodies to make new cells. It is important because it can help prevent some major birth defects of the baby’s brain and spine. A woman needs to start taking it at least one month before she becomes pregnant, and while she is pregnant,” points out Doris.
The World Health Organization (WHO) and Centre for Disease Control and Prevention (CDC) recommends that women take 400 microgrammes of folic acid every day, starting at least one month before pregnancy with the sole aim of taming spina bifida and other neurological anencephalies.
Though at peace with life on a wheelchair, Phoebe has suffered stigma in substantial proportions. Gossip, her mother says, has at times sent her into depression.
“She was the only girl on a wheelchair at school,” her mother says, adding, “And the only one who had her mother come to school to empty her bladder. A psychologist assessed her and concluded that she was better off out of school. I hoped that another school would accept her, but the fact that she needed almost all-around-clock monitoring worked against us.”
Like Erick, Phoebe has lived through a sequel of surgeries. She also developed colitis – a condition that caused her spine to warp into a curve.
Both have dreams: Erick would love to make his own money from poultry farming, while Phoebe hopes to be a computer engineer someday.
However, that they would love to have normal lives like their peers is not a subject for debate. Life with limbs but without the ability to use them has turned out to be a nightmare.