On October 25, World Spina Bifida and Hydrocephalus Day raises awareness and understanding for these diseases that affect the spine and the brain. It’s also a day to advocate and promote the rights of those living with these conditions.
“Wesley is seven years old but was born 16 weeks premature and suffered a traumatic brain injury (TBI) shortly after birth. While in the Neonatal Intensive Care Unit, he was diagnosed with Hydrocephalus when he was only a few weeks old.
Hydrocephalus is a chronic condition in which there is a buildup of excess cerebrospinal fluid (CSF) in the brain’s ventricles. CSF normally circulates throughout the brain and spinal column, but it can become blocked and pool in the ventricles, causing them to widen and put harmful pressure on the brain’s tissues. Causes of Hydrocephalus include head injuries, brain tumours, genetic inheritance, or may be associated with developmental disorders like spina bifida. Signs and symptoms are usually a bulging fontanelle and setting sun eyes (in infants), unusually large head size, lethargy, vomiting, and complaints of headaches. Cognitive displays of hydrocephalus can also present themselves through changes in personality, slowing or loss of developmental progress, impaired cognitive skills, and memory loss.
There is no cure for Hydrocephalus, but there are several ways to treat it. Spinal taps, implanting an Ommaya Reservoir, and, most commonly, implanting a device known as a shunt are ways to help circulate the excess CSF normally throughout the body.
Wesley began presenting symptoms of Hydrocephalus a few weeks after birth. He has had spinal taps, an Ommaya Reservoir, and several shunt revisions since his diagnosis. Today, he has had a total of 7 brain surgeries related to his Hydrocephalus. As a lifelong illness, he must be followed long-term by his neurosurgeon. A shunt can go from working for 18 years to suddenly malfunctioning. The shunt valve can become clogged, or the pressure in the shunt may be too little or too much for the individual. The success of shunt revisions is unpredictable, but immediate treatment encourages a positive outcome.
As parents, we are constantly on the lookout for signs of shunt malfunction or failure and must also provide this information to his caregivers and schoolteachers. Wesley is also learning to advocate for his needs and being able to identify his own signs of shunt malfunction or failure.”
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