What you need to know:
- Spina bifida is a congenital anomaly where the spinal column does not develop normally during the first weeks of pregnancy. This causes permanent damage to the spinal cord and nervous system and can result in paralysis of the lower limbs or problems with bowel and bladder function.
- Hydrocephalus is a build-up of fluid in the brain. The excess fluid puts pressure on the brain, which can damage it. If left untreated, hydrocephalus can be fatal.
Looking back at her traumatising long labour experience at Wamba Hospital, Samburu County 13 years ago, Risper Lwanga looks desolate. Memories of the excruciating experience she had after her child was diagnosed with both spinal bifida and hydrocephalus conditions cloud her psyche with melancholy.
Staring at her one-month old son being taken for multiple surgery, she tells Healthy Nation at her Ongata Rongai home, was the most painful experience in her life.
According to the National Institute of Neurological Disorders and Stroke, spina bifida is a congenital anomaly where the spinal column does not develop normally during the first weeks of pregnancy. This causes permanent damage to the spinal cord and nervous system and can result in paralysis of the lower limbs or problems with bowel and bladder function. Hydrocephalus is a build-up of fluid in the brain. The excess fluid puts pressure on the brain, which can damage it. If left untreated, hydrocephalus can be fatal.
“I got pregnant immediately after completing my secondary education. Being brought up in a village, I never went for clinics and pregnancy checkups. I didn’t know how important they were until I gave birth,” explains the mother of two.
Risper says her child was born with a growth at the back and the doctors referred her to Kenyatta National Hospital. In her entire life, she had never heard of such conditions.
“The doctors told me that I was not eating foods rich in folic acid and that is why my child developed the conditions.”
She decided to go to Kijabe Hospital, where her son was operated on to remove the growth. The doctors informed her that her son also had hydrocephalus. He was operated again and a shunt was inserted to drain excess water from the head.
Since she could not raise Sh288,000, she was forced to prolong her stay in the hospital for a month. When the child turned eight years old, he started complaining of mirage and migraines, which got her worried.
“When I took him to the hospital for check-ups, the doctors discovered that the ventriculoperitoneal (VP) shunt, which is a thin plastic tube that helps drain extra cerebrospinal fluid (CSF) from the brain to the stomach, had disconnected and one end coiled on the intestines.”
The doctors performed another surgery to change the shunt from depositing excess water from the stomach to the chest. But now, because of the shunt, he cannot control his bowels, which forces his mother to change his diapers all the time. She has trained his son to use Clean Intermittent Catheterisation (CIC) to drain urine by passing a catheter through the urethra, past the sphincter into the bladder after every three hours. “
He is in a wheelchair and every time he feels like peeing; he rushes to the toilet to insert the CIC,” Risper sorrowfully explains.
Every night using a special pipe, she takes 750ml of warm water, inserts through the rectum to get to the stomach as a way of cleaning the bowel to ensure that he does not get any further infection.
She takes him to a therapist twice a week and each therapeutic session costs Sh700.
As a way of creating awareness, Risper founded a group that has already attracted 25 other women whose children have the same conditions. She trains them on how to take care of their children.
Stanley Imbiti, 47, tells Healthy Nation that the condition of his child was not recognised immediately after birth. “It’s my mother who opened my eyes about the child’s condition. My daughter could fall backwards when put to sit. She told us to take the child for a checkup,” says Stanley.
That is when they realised that their child had hydrocephalus.
She was taken for surgery in Kijabe and a shunt inserted to drain the extra water in the brain at a cost of Sh56,000. The daughter is under medication and every time she gains weight; she is taken for diagnosis.
In a month, she uses four bottles of Tegretol syrup and each costs Sh1,500. Sometimes the brain causes multiple signals, which may cause seizures.
According to research, most children with hydrocephalus are able to walk but the only challenge is that their IQ is not as sharp as other children’s.
Dr Martin Kenduiywo, a neurosurgery clinician at Kijabe Hospital in partnership with Bethany Kids, a Christian Organisation that deals with children with surgical condition and disabilities, says every week they perform between eight to 10 neuro surgeries.
Dr Kenduiywo says hydrocephalus entails an abnormal build-up of cerebrospinal fluid (CSF) in the cavities of the brain. “The condition is noticed before or after the child is born. It can also be caused by blood clots in the brain, meningitis, brain tumours or head injury.”
He explains that hydrocephalus is treated through surgical procedures called Endoscopic Third Ventriculostomy/ Choroid Plexus Cauterisation (ETV/CPC). The surgeon creates an opening to drain off the unnecessary CSF.
“When one is diagnosed with hydrocephalus, the patient needs management such as visiting hospitals for CSF draining. Patients start speaking well, walking, eating and their head sizes reduce.”
He asks parents to be cautious when they notice any change in their children. “Be close to your baby especially at an early age so that if you notice any change, you visit a clinic.”
Scientist agree that most hydrocephalus cases occur when an expectant mother lacks enough folic acid. Expectant mothers should therefore eat foods like broccoli, leafy green vegetables such as cabbage, kales and spinach, peas and liver (before pregnancy).
According to the Ministry of Health, an average of 1,000 children are born with the conditions yearly.
The major hospitals dealing with the condition in the country include Kijabe, Coast General Hospital, Kenyatta National Hospital and Moi Teaching and Referral Hospital.
Bethany Kids carry out mobile clinics to the patients diagnosed with such conditions.
Common signs and symptoms of hydrocephalus in infants:
Changes in the head
• An unusually large head
• A rapid increase in the size of the head
• A bulging or tense soft spot (fontanel) on the top of the head.
Physical signs and symptoms
• Nausea and vomiting
• Sleepiness or sluggishness (lethargy)
• Poor eating
• Eyes fixed downward (sunsetting of eyes)
• Problems with muscle tone and strength
When to see a doctor
Seek emergency medical care for infants and toddlers with these signs and symptoms:
• A high-pitched cry
• Problems with sucking or feeding
• Unexplained, recurrent vomiting