A birth defect diagnosis can be difficult to comprehend and prepare for. Sharon Moureen felt shocked when her newborn son Merlin Aketch was diagnosed with spina bifida.

“Shortly after my son’s delivery, I remember seeing his face. And then I remember noticing an odd swelling like a bump on his back. It looked like an extra rump on his bottom,” she recounts.

She later came to learn through a diagnosis that her son suffered from Spina bifida, a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD), which happens when a child is born when their spine has not fully developed.

Difficult to accept what had happened, Sharon decided to embrace everything that had to come with the condition. She chose not to allow her son’s disability to determine who she is, but rather what she and her son have to overcome to live life to the fullest. 

Now 10 years old, Merlin has been in and out of the hospital tens of times and has passed through eleven corrective surgeries, which have enabled him to walk independently.

Financial strain

“At one point he even got hit by a car and he survived through it. It has been tough to say the least. He has been through different schools and is doing well in his studies,” she narrates.

Some of the challenges she has had to deal with is constant discrimination by people who do not understand her son’s condition. She has also undergone serious financial strain trying to manage the condition. “My son needs a lot of care. He is constantly in diapers and will soon be going for his 12th surgery that will cost us Sh300,000,” she says.

Understanding the struggles that people living with spina bifida, as well as caregivers of children with spina bifida go through, Sharon and her son started creating awareness about the condition through their foundation Neuro Kids Warriors. “Raising a child with spina bifida, I can totally relate with the struggles that parents and caregivers face. I am advocating for education for special children and currently she is educating three children with the same condition in three special schools in Kenya- in Nairobi, Kisumu and Migori,” Sharon shares.

In October this year, Marlin was ranked the youngest activist in Kenya by The United Nations Population Fund (UPNFA) for his advocacy on education for special children.

The mother of two explains that the organisation decided to focus on education  because of her own and other parents challenges with finding not only schools, but the right schools for their children. We also push for accessibility to affordable quality health.

They also strive to build a strong case and communicate their needs as a group thus parents and caregivers with children living with these conditions are urged to come out and share their stories, participate in related forums that create awareness.

Dr Nyamora Teresa, a medical officer at AIC Kijabe Hospital neurosurgery department says the causes of the condition is mostly unknown, but thought to be a combination of nutritional, genetic and environmental factors. “A major risk factor for developing this condition is lack of folic acid in women before conception and during the first few weeks of pregnancy,” she noted.

Urinary incontinence

Nyamora points out that there are two main types of the condition: Spina bifida occulta, which is a dimple seen on the back or a patch of hair or sometimes nothing, but there is a defect at the vertebrae. The second one is spina bifida cystica. This presents with a cystic lesion along the vertebral column mostly on the lumbar aspect.“This condition is symptomatically manageable, but not curable. For example, if present with a cystic swelling at the back, this is closed surgically,” she pointed out, adding that most children present with lower limb deformities, which the pediatric orthopedics team manage even as later on they may present with urinary incontinence with bowel dysfunction.

She comments that the caregivers undergo training on how to manage this and as the children become independent, they are taught how to do it for themselves, such as clean intermittent catheterization (CIC). If they develop hydrocephalus, a ventriculoperitoneal shunt is inserted to divert the fluid in the brain to the abdomen mainly.

She further clarifies that most of the children born with spina bifida also have associated defect at the base of the brain whereby the brain pushes down on the spinal cord, thereby blocking the flow of the cerebrospinal fluid even as it leads to accumulation of the fluid in brain spaces known as ventricles, increasing pressure in the brain and consequently resulting in hydrocephalus.

Sometimes, the children present with both spina bifida and hydrocephalus, other times, they develop hydrocephalus after the closure of the spina bifida.

On whether there is an age bracket for the condition, Nyamora explains; “It is congenital, so someone is born with it, but for hydrocephalus, then it depends. Some children are born with hydrocephalus-congenital, but a greater population gets hydrocephalus following infections that affect the brain-meningitis. A smaller population develop hydrocephalus as a result of an underlying pathology, such as spina bifida and tumors,” she explains.

How is spina bifida diagnosed in pregnancy?

Luckily the condition can be diagonised during pregnancy. Mostly, doctors use the maternal serum alpha fetoprotein (MSAFP) screening and fetal ultrasound even as they can also perform an amniocentesis test.

On the management of the condition, Nyamora says it is surgical, medical and rehabilitative. Patients with spina bifida present with different problems, such as bladder and bowel dysfunction, skeletal malformations, motor and sensory deficits.

The presentation of the child guides their management. Mostly it starts with surgical repair of the cystic lesion, then follow up for management of any arising issues even as there is an aspect of rehabilitative training of the children born with spina bifida.

Life-altering education

The same include training on, clean intermittent catheterisation(CIC), bowel management, movement independence (be it with a wheel chair). “The above trainings are carried out by our able Bethany Kids mobile team who go from region to region, identifying the patients and providing life-altering education to the families and communities at large,” she says.

The condition is a debilitating condition and most children require lifelong follow up. It comes with its fair share of associated malformations, especially skeletal and most times than not, the affected population are wheelchair bound or learn to walk with aid.

There are certain exercises for children with the condition, which include among others swimming, crawling under chairs, desks or over a mat or pillow on the floor even as there are special foods for their consumption, such as whole grains, fruits and vegetables and fat-free and low-fat dairy products. Sources of proteins ought to be lean; fish, poultry, tofu, legumes, and lean red meat.

There is need for creating awareness on this condition as it takes a community to raise a spina bifida patient. The condition can also be managed by a multidisciplinary team, including neurosurgeons, pediatric orthopedic surgeons, occupational therapists, urologist physical therapists, pediatricians, social workers, and psychologists, among others. “ I would say that patients with spina bifida are some of the strongest people I have seen as they learn to live with so much ‘disability’ and still afford to smile and bring joy to many,” she says in conclusion.