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Ind. woman educates others about hydrocephalus

Published on NewsOK Modified: January 21, 2013 at 6:21 am •  Published: January 21, 2013

BLOOMINGTON, Ind. (AP) — When 25-year-old Megan Elmore was 20 weeks pregnant with her second child, she underwent a routine ultrasound in the office of her Bloomington obstetrician/gynecologist.

"Her head measurement was way off," said Elmore, a single mother from Gosport whose firstborn is a healthy 2-year-old son. "I was very concerned."

Further testing at two Indianapolis hospitals revealed that her baby, Aila, had hydrocephalus — an incurable condition that causes excessive fluid to collect in the brain, abnormally enlarging the head and placing potentially fatal pressure on brain tissues. The disorder affects about 1 in every 500 births.

When Aila was born four months ago, her head circumference was 46 centimeters, about 11 centimeters larger than normal for a full-term newborn. At the Riley Hospital for Children at IU Health, doctors placed a shunt into her skull just above her temple to drain fluid from her brain into a tube that empties into her abdomen.

But the shunt does not drain all the excess fluid because Aila is missing most of her cerebral cortex, a sheet of neural tissue in the brain that plays a key role in memory, attention, perceptual awareness, thought, language and consciousness.

"If they drained all the fluid, her brain would collapse and she would probably die," Elmore told The Herald-Times ( ). "So the shunt is used to keep her fluid level stable and prevent the pressure on her brain from becoming dangerous. She will need the shunt for the rest of her life."

Elmore said it's too early to know the long-term effects of Aila's condition, which can cause such things as learning disabilities, memory problems, motor skill disabilities, seizures and hearing or vision problems.

"The doctors can't say whether she will be able to walk or talk," she said. "But so far, she is eating and breathing on her own. My hope is that she will be able to have a life as full and productive as humanly possible."

During her pregnancy with Aila and after her daughter's birth, Elmore received a wealth of support from not only from her mother and other family members, but also from the Pediatric Hydrocephalus Foundation, a nonprofit organization with 30 state chapters that funds research and provides support to families, friends and children affected by the disorder.

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