Bottomline: No one knows what tomorrow has in store for them, an accident could render one paralyzed or with a condition like mine.
She is an ever happy woman who looks at life with a third eye savoring it with a sixth sense.
Her story gives the average woman hope, encouraging her to believe beyond measure. Deborah Nzisa Kalulu, at the age of 31 years, has managed to withstand all hurdles living with Spina bifida-a rare condition of the brain and spinal cord.
Spina bifida is a birth defect that comes about when the spinal cord doesn’t form properly. It is a type of neural tube defect. The neural tube is a structure in a developing embryo that eventually transforms to become the baby’s brain, spinal cord and the tissues enclosing them.
Normally, the neural tube forms early in pregnancy closing by the 28th day after conception. In babies with Spina bifida, a portion of the neural tube doesn’t close or develop properly, causing defects in the spinal cord and in the bones of the spine.
The condition could range from mild to severe depending on the type of defect, size, location and compliance. When the condition necessitates, early treatment will involve surgery; even though such treatment doesn’t always eradicate the ailment. The condition normally occurs when expectant mothers lack sufficient quantities of folic acid. This explains why some women crave nonfood substances including earth and clay during pregnancy. A phenomenon common as ‘geophagy’.
Categorically, there are four types of Spina bifida including spina bifida occulta (mildest and most common in which one or more vertebrae are malformed), myelomeningocele, closed neural tube defects and the rare type ‘meningocele’ that Debora has survived with since birth.
As I sit down with Deborah, she shares her story openly with the view of inspiring people living with disability (PWDs) around the Coastal region and beyond.
“I was born in a family of two mothers. My biological mother and step mum. From my step mum’s side, I have six siblings whereas from my mum sede I have four siblings. Out of all children, I was diagnosed at birth with Spina bifida ‘meningoceles’, a rare type of spine condition,” said Deborah with a broad smile.
Meningoceles is a birth defect where there is a sac protruding from the spinal column. The sac includes spinal fluid, but does not contain neural tissue. It may be covered with skin or with ‘meninges’ (the membranes that cover the central nervous system).
Growing up, Deborah had to delay her education owing to difficulties in sitting, walking and supporting her spine. She had a hump behind her at the vertebral column that made her spend much of her 10 years of childhood darting from one health facility to the other including A.P.D.K Port Reitz clinic in Mombasa , Bethany Hills Kijabe, Pandya hospital Mombasa and several others.
In the process, a lot of finances were gobbled in hospital bills, spine scans and X-ray sessions, notwithstanding physio-therapeutic sessions to straighten her limbs since she had one heavier limb and a limb condition ‘talipes equinovarus’, popularly known as club feet.
“My education was delayed until I was 12 years old when I enrolled for kindergarten. As I was still young, I fondly remember that I had a wound on the upper part of my right leg. Sitting in class was a problem being a Spina bifida patient, concentrating was equally hectic. Moreover, I used to score poor grades in mathematics then, a trend my teacher would not condone. To this end, I would get lashed and punished for failing to post exponential marks in internal examinations. All this didn’t rub so well on my self esteem. But would I be where I am today were it not for such teachers? I doubt,” she laughs.
When she joined secondary school, she lived a smooth life. For this she shall forever be indebted to her elder sister Esther Mueni, who works abroad as an interior designer for home and event spaces.
In this exclusive interview with Campuserian she tells us how at some point, her sister had to foot a Ksh 90,000 medical bill as the wound on her leg had been covered but was scraping her flesh from the interior. It reached a point where she urged her sister to cut off the financial support because of her extraordinary efforts in managing this condition since birth.
Amid sensory nerve impairment, patients of Spina bifida experience frequent skin breakdown, Something that necessitated an operation for Deborah at A.P.D.K clinic Port Reitz, Mombasa county. The wound on her right leg had to be grafted through surgery.
Albeit this, the wound was incredibly scraping off her flesh from the interior and doctors warned of the possibility of eating up crucial internal organs including kidneys, liver, intestines and stomach wall.
“What happens with wounds amongst Spina bifida patients is that the individual is unable to feel any sensory stimuli on her body. Noticing pain on the affected area becomes almost impossible; a factor that makes the extent of the wound gain momentum, eating off flesh tremendously. If unnoticed, or in case the patient cannot feel stimuli, the damage gets to inner organs, destroying them. This could ostensibly lead to death” said Deborah.
In dressing the wounds, Deborah’s sister would use salty water obtained from the Indian ocean. Doctors with specialty in Spina bifida, hydrocephalus (sbh) will however recommend normal saline water, (NS-0.9) that is used intravenously as drip water in admitted patients who are dehydrated. This water does not corrode the affected area as compared to salty water.
“In the mildest form of Spina bifida known as ‘occulta’ symptoms are very hard to come by. The baby could, in some cases be born with a tuft of hair on the site of the defect. Also, in the case of meningocele, there may be a thin layer of skin over the sac. With myelomeningocele, there’s usually no skin covering, and the spinal cord tissue is out in the open,” explained Dr. Glory Bahati, a physician at Shimo La Tewa Annexe – a public health facility in Bamburi ward.
Debora now works with ‘Pritiest girls’ an organization that empowers young ladies with conditions like hers to become ambassadors for Spina bifida alongside people living with disability around the world. She is also the chairperson of Spina Bifida Hydrocephalus Association of Kenya (S.H.A.K), Mombasa region.
In her day to day engagements, she does presentations to create awareness of the spine and brain condition, shows up in related events. She does all these with the aim of inspiring victims suffering from the same malady, so that they know where to access funds for babies born with Spina bifida to finance their academics, health check ups, surgeries and crutches. The money could be followed up with the gender office, county government or county representatives for people living with disability (PWDs).
“Pritiest Girls, formed in 2019 December nurtures ambassadors who defend women rights, role differentiation, inclusivity and demanding space for women in political and social paradigms in the Coast region. With a campaign advocating for (PWDs) rights, gender awareness, social responsibility, taking future into our hands as women and youths through workshops on sustainable development goals (S.D.G), how to use them, empower women and even men. The organisation started with 10 ambassadors only, but is at expanding,” said Debora delightfully.
“I appreciate Vera Achieng, my neighbour at Kwa Mlamu, Mshomoroni in Mombasa county.She normally assists me in hanging my clothes on the clothe line whenever I do my laundry. She would help me light my charcoal jiko because doctors warned it was unsafe should I do it by myself from the house,” said Deborah.
She recalls that as a todler, she had to undergo a complicated surgery with 10 surgeons on board as the Central Nervous System is one of the most complex systems in human bodies. She went through the surgery unscathed but was unable to lift her legs. To this end, her dad effortlessly liaised with her now late mother to take her to and fro, for physiotherapy at an (Sbh) clinic.
“Patients of Spina bfida in most cases do not experience natural urinalysis and bowel emptying. Normally depending on alternative processes for the same, aided by medical devices. Amidst the individuals living with Spina bifida, an abbreviation common as (C.I.C) is used whenever patients want to empty their bladders . To mess one’s garments is not news to survivors of such a condition, since their nervous system is often malfunctioned,” explained Deborah.
Before her mother went to be with the Lord, she managed to ‘steal’ skills in crocheting neck scarfs, hair clips, table mats and many more that she sells to earn a livelihood. Owing to her condition however, she experiences challenges in making ends meet with customers failing to meet deadlines for products purchased on credit.
In dealing with her condition, doctors had to record from birth her current age by the time she began seeking treatment, age at wound presentation, sex, weight, functional neurological level, wound location, setting in which the wound was acquired, development of a chronic wound and presence of a shunt.
“Patients of Spina bifida exhibit bowel and urinary incontinence which posses high chances of developing meningitis. The above conditions could be treated in two ways as respectively shown below.
Mitrofanoff procedure where the surgeon removes the appendix creating a small channel, which leads to an opening or stoma, just below the belly button. The patient if a child, can place a catheter into the stoma to release urine and empty the bladder in a process known commonly as (C.I.C),” said Dr. Glory Bahati.
Long term use of antibiotics may equally be necessary to prevent urinary tract and kidney infections. Among the symptoms that patients of this disorder display include difficulties in coordination (visual and physical coordination) in this, even doing up buttons or shoelaces might be difficult for the patient.
In special hospitals that have got Spina bifida patients, doctors combine leg braces to assist those with partial paralysis, computers and specialized software to help those with learning difficulties, boots to sculptor club feet, cossets to maintain a straight posture and many others. Patients with Spina bifida in the long run may also posses hydrocephalus. However, not all spina bifida survivors have hydrocephalus and Deborah is a living testimony.
Hydrocephalus patients have (C.S.F), which is a watery fluid that flows through cavities inside the brain, around the surface of the brain and spinal cord. If there is too much (C.S.F), this can lead to hydrocephalus, pressure on the brain ultimately causing brain damage.
“I’m pleading with people investing in real estate to accommodate (Sbh) patients alongside people living with disability (PWDs). No one knows what tomorrow has in store for them, an accident could render one paralyzed or with a condition like mine. When constructing these houses and socio-infrastructural facilities, let the design, stair type and ramp be friendly to people living with disabilities ” said Deborah.