Maureen, named after her grandmothers, was born on September 22, 2006. She was born with wisps of red hair, deep blue eyes, chubby cheeks and Hydrocephalus, a fatal condition if not treated.
When Maureen was born, doctors also discovered that she was missing most of her corpus callosum, which is the part of the brain that allows the two hemispheres to “talk” to each other. How that might affect her development was (and still is) unclear.
At nine days old Maureen had her first of seven brain surgeries. The first one was to try to create a natural opening for the fluid to drain, but it didn’t work.
Less than a month later, Maureen had her second brain surgery to put in her shunt. Unfortunately, with her first shunt, Maureen’s CSF was still leaking outside of the shunt, which meant that doctors had to go in a perform a shunt “revision”, which is a nice way of saying two more surgeries – one to remove the old shunt and one to implant a new one.
After this third brain surgery Maureen’s head began to leak fluid from the incision. Doctors found the fluid was infected, and that it had traveled up her shunt and into her brain, causing meningitis. Because of her age and the severity of the infection, nobody knew whether Maureen would recover.
After two weeks of very strong antibiotics, Maureen had her second revision. While her fifth brain surgery was deemed successful, Maureen developed a blood clot in her leg from the antibiotics going through her little veins. For the next four months at home, her parents had to give her two injections a day of blood thinner.
After this seven month ordeal, Maureen began intensive therapy. Among the therapies she received every week were physical therapy to help her crawl and eventually walk, occupational therapy for fine motor skills, developmental therapy, vision therapy, and speech therapy. In all of these areas she was delayed more than 30%, and in some cases up to 50%. She also got glasses to treat her extreme farsightedness, it is not uncommon for Hydrocephalus to affect the eyes due to the pressure from the build up of fluid. For the last five years, Maureen has gone once a month to her ophthalmologist to have her eyes checked, and now wears bifocals.
In September 2008 she had eye surgery to try to strengthen the muscles in her eyes. The benefits were short-lived, and Maureen may need more eye surgeries in the years ahead.
As she has her whole life, she took all of this in stride, and handled it much better than her parents.
Over the years, Maureen continued therapy, and was generally healthy. She became a big sister in 2008, started school the next year, and attended special education classes in addition to her numerous therapies. Her weeks were divided among school, weekly therapies, and all of her doctor visits. Things were going well.
After two years without a surgery, on December 15, 2010, Maureen developed a 105 degree fever. Doctors found that an infection made its way into her blood, and went to her shunt. Once again, she developed meningitis, and required a shunt revision, with strong antibiotics in between the two brain surgeries.
After her seventh and most recent surgery, doctors realized that part of the catheter from her old shunt broke off, and was embedded in her brain. It was decided that the risk of trying to go in and get it was higher than leaving it in, so it’s still there.
And now? Maureen attends two different schools to meet her varied needs, takes ballet, reads books, practices veterinary medicine, including implanting shunts on her stuffed animals (she knows all of the medical terminology). She is smart, funny, imaginative, unique, and can be silly one minute and exhibit her old soul the next. She is a wonderfully complicated wonderful girl.
And while things are good today, her parents live with the fear of the unknown – not knowing when the next infection may strike; not knowing when she may bump her head and need a CT scan; not knowing when her shunt may become clogged or malfunction. Every headache, every fever, every backache, every time she throws up, could indicate her shunt is malfunctioning, or could just be a part of being a little girl. Her parents wake up every morning hoping that whatever happens that day, she can just be a little girl.