Ayesha Gope is seven-year old but has never been out of her bed-since birth due to her abnormal head growth.
She suffers from a rare congenital medical disorder called Meningoencephalocele in which is a skull defect with abnormal sacs of fluid, brain tissues and membranes protruding out the normal head shape. It’s like head behind a head. This leads to restricted development of physical and intellectual abilities of the child.
Evidence suggests meningoencephalocele affects 1 in every 5000 new born babies.
Ayesha underwent a series of surgeries at Christian Medical College (CMC) in Vellore to treat her condition. She also required nutritional and physiotherapeutic assistance at home for six months before beginning a normal lifestyle.
A similar case occurred in Philippines with baby Miracle Bless, born on May 9, 2014 to 23-year olds, Jasha Nicole Benjamin and Michael Moreno. During prenatal examination she was diagnosed with a congenital defect but at the time of birth, Miracle Bless had a cleft lip and occipital meningoencephalocele which could be seen as a sac-filled protrusion at the back of her head – Cerebral spinal fluid accumulated in this sac. Generally, surgeries are recommended to excise and remove the bump before the child turns 6 months old.
Farlex Partner Medical Dictionary defines Meningoencephalocele as “a protrusion of the meninges and brain through a congenital defect in the cranium usually in the frontal and occipital region.”
Almost 80% of the meningoencephalocele patients suffer from defect in the occipital region (at the back of the head). Due to certain environmental and genetic factors, skull bones do not diffuse properly during the foetal development, thus leaving a gap, ultimately leading to cerebral spinal fluid and membranes (called meninges) leaking out of the gap into a sac which eventually abnormally increases in size.
Meningoencephalocele is more commonly found among females as compared to the males.
Largely, most foetus with meningoencephalocele die in the womb. The location and size of the sac has a major impact on the survival chance of the baby. There are numerous other complications that may occur in the patients of meningoencephalocele such as abnormal accumulation of fluid in the brain, paralysis of the arms or legs, smaller than average head size, uncontrolled involuntary movements, seizures, retarded growth, delay in developmental milestones and vision problems.
Treatment of meningoencephalocele involves making surgical cuts to put back the protruded fluid and meninges back into the cranium and closing the gaps. Surgery must be done within four months of the birth. After surgery, ventilator support is required for breathing assistance. For few weeks, the baby is kept in the ICU for further recovery and observation. Although thanks to modern medical advancement many cases of occipital meningoencephalocele are cured but many of these babies may live the rest of their lives with some or the other intellectual and/or physical disabilities.
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