30 years in the dark: I had no clue my daughter had spina bifida
Juliana Auma who 30 years ago gave birth to a daughter with hydrocephalus and myelomeningocele, the most severe type of spina bifida.
What you need to know:
- Thirty years ago, Juliana gave birth to a daughter with hydrocephalus and spina bifida, without understanding the condition.
- Her experience led her to found the Spina Bifida and Hydrocephalus Association of Kenya in 2013, aiming to support parents and raise awareness about preventing these birth defects through proper nutrition.
Juliana Auma's world shattered 30 years ago when she gave birth to a daughter with a mysterious condition. Little did she know, this moment would spark a lifelong mission to prevent other parents from facing the same bewildering ordeal.
Auma's daughter was born with hydrocephalus and myelomeningocele, the most severe type of spina bifida, a birth defect where a baby's spinal cord fails to develop properly.
"There was no internet or Google then to search for information. I came to know about it years later and understood the importance of cooking and eating healthy, especially consuming adequate amounts of folate or folic acid," Juliana told Nation.Africa recently.
Driven by her experience, Auma founded the Spina Bifida and Hydrocephalus Association of Kenya in 2013, offering support to parents caring for children with birth defects. Her organization tirelessly educates men and women about healthy eating and nutritional supplements.
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"As long as one is sexually active, take supplements regularly," she advised.
Foetal to Newborn Care Centre explains that spina bifida occurs when a baby's spine bones don't fully form during early pregnancy, between 20 and 28 days of gestation, often before a woman knows she's pregnant.
While data on spina bifida and hydrocephalus prevalence in Kenya is limited, a 2014 study in Pan African Medical Journal reported 3.3 cases per 10,000 live births at AIC Kijabe Hospital from 2005-2010.
Preventable
A 2010 study in the National Library of Medicine indicated East Africa records more than 6,000 new infant hydrocephalus cases annually.
Neurosurgeon Dr Peter Wanyoike emphasises the importance of folate or folic acid for preventing these conditions. He recommends 0.04 milligrams daily, obtainable from foods like spinach, carrots, beans, and oranges.
"Spina bifida and hydrocephalus deformities are preventable. Although there are also other factors like genetic and environmental factors, food is the key," he stated.
Wanyoike believes if 9-24 year-olds build up pre-conception folate through diet, fortified cereals, and enriched school meals, Kenya could significantly reduce neural defects in new-borns.
"Kenya records at least 200 cases of spina bifida each year which are preventable. But the tragedy of this is that most of these children are born of teen mothers," he revealed.
While expectant women receive folic acid supplements during antenatal visits, many start check-ups too late to prevent these conditions.
"The nervous system forms within the first 30 days of conception but they (women and girls) go to hospital when they are a month old or even three months. Even if you get the supplements at that time, it is useless, it won't help," the neurosurgeon explained.
