By Abha Ranjan Khanna
Early childhood is an ideal time for babies as this is when their brains develop and grow exponentially. Joyful loving experiences and responsive nurturing care during the early years (birth to six years) lay the foundation for all later learning and skill acquisition. This is true for all babies – even those diagnosed with spina bifida at birth.
Spina bifida is a neurological condition and about one million cases are reported in India each year. Literally meaning “cleft spine,” it is characterised by the incomplete development of the brain, spinal cord, and/or meninges (the protective covering around the brain and spinal cord).
Spina bifida affects every child differently and some babies need specialised treatment. Children with the mildest form of spina bifida – spina bifida occulta, rarely need treatment. Thus, no two babies with spina bifida are exactly alike. Health issues will be different for each baby. Some babies have issues that are more severe than other babies. With the right care, babies born with spina bifida grow up to reach their full potential.
Research on genetics and environmental factors is ongoing and there are ways for women to reduce the risk of having a baby with spina bifida during pregnancy. Research indicates that mothers with low levels of the common vitamin B (folic acid) are at high risk of having a baby with spina bifida. Therefore, taking folic acid every day during pregnancy is recommended by doctors. Spina bifida happens in the first few weeks (28 days) of pregnancy, often before a woman knows she’s pregnant.
When parents find out that their child has spina bifida, it can be very overwhelming. It is important that they know that most children born with this ailment reach their full potential and enjoy a regular fulfilled life.
It is also important that parents take an active role in managing their child’s care. Parents need to know about spina bifida and understand the health issues and treatment options to make the best possible choices for the health and happiness of their child. Parents can start by learning all they can about the ailment.
When a baby is born with open spina bifida, in which the spinal cord is exposed (myelomeningocele), doctors will perform surgery to close it within the first few days of the baby’s life.
Many babies born with spina bifida get hydrocephalus (often called water on the brain). This means that there is extra fluid in and around the brain and the head can swell. Hydrocephalus needs to be followed closely and treated properly to prevent brain injury.
For toddlers and preschoolers with spina bifida, there are many ways that parents and other caregivers can help them become more active and independent, such as:
· Teaching the child about his or her body and about spina bifida.
· Encouraging the child to make choices, such as between two items of clothing.
· Asking the child to help with daily tasks, such as putting away toys.
Like any toddler a young child with spina bifida has a lot of energy and enthusiasm for exploring and learning about the world and becoming independent. Parents must start helping their child develop independence early in childhood.
Children with spina bifida might need extra help at times. But it is very important that children be given the opportunity to complete a task before help is given. It is also important that parents give only the help that is needed rather than helping with the entire task. Parents must learn the difficult balance between giving the right amount of help to increase their child’s independence and confidence, while at the same time being careful not to give the child tasks that cannot reasonably be completed?which might decrease their child’s confidence.
(The writer is an occupational therapist.)