Mother of child with hydrocephalus hopes to raise money, awareness

Mother of child with hydrocephalus hopes to raise money, awareness

September 15th, 2012 by Mariann Martin in News

Three-year-old Ema McLaughen, who was born with hydrocephalus, plays with her toy kitchen set.

Photo by John Rawlston/Times Free Press.

IF YOU GO

What: Second Annual Greater Chattanooga Area Hydrocephalus Association 5K Walk

When: Saturday, Oct. 27. Registration begins at 9:30 a.m.; walk begins at 11 a.m.

Where: Coolidge Park, 105 River St.

For more info: Contact Chara McLaughen at charanemahawalk@gmail.com or call 423-954-0059.

Sign up: Register the day of the event or online.

FAST FACTS

• Hydrocephalus, once known as "water on the brain," is a chronic condition caused by an abnormal accumulation of cerebral spinal fluid, resulting in pressure on the brain.

• More than 1 million Americans are affected by hydrocephalus, with about 8,000 babies born every year with the condition.

• The most common treatment is brain surgery to implant a shunt, a treatment that has been used for about 50 years.

• A shunt has a 50 percent failure rate in the first two years, requiring further operations.

• The government spent $6.4 million on hydrocephalus research in 2011, a cut from about $8 million spent in 2010.

Source: The Hydrocephalus Association

Three-year-old Ema McLaughen thinks red and white oven mitts make a good hat, and begs her mom to let her wear lipstick. She wants to be a princess when she grows up.

A princess with a shunt implanted behind her ear, hidden by her blond ringlets and pink bow.

Born with hydrocephalus, Ema had three brain surgeries before she was 18 months old, the first to implant the shunt, the next two to fix problems when the shunt failed.

Her shunt likely will fail again.

That knowledge drives her mother, Chara McLaughen, to approach strangers about hydrocephalus, to visit businesses to ask for food and fundraising dollars and to spend hours planning a walk in Coolidge Park to raise money for hydrocephalus research.

"If raising this money will help someone not to go through what we went through, then it will all be worth it," McLaughen said.

Some people are born with hydrocephalus, and others develop it after a stroke or traumatic injury.

Ema was diagnosed with a cyst on her cerebellum three weeks before she was born, with the cyst blocking the normal drainage of cerebrospinal fluid in her brain.

Typical treatment involves implanting a shunt into the brain to drain the fluid, a procedure that has changed little in the last 50 years. Almost all shunts eventually fail multiple times -- many people have dozens of surgeries to fix them.

McLaughen said little research is being done on the condition, and little money is spent to find better treatment.

Over the last four years, the government spent about $30 million on any research about hydrocephalus, only about $7 a person per year. By comparison the government spends $63 per person on Parkinson's Disease research and $10,443 per person on cystic fibrosis, said Amanda Garzon, spokeswoman for the Hydrocephalus Association.

In 2009, the association expanded providing support and information to raising money for research. It is now the largest nonpublic funder of research on the disease, contributing about $1 million so far.

With its funding, the association hopes to stimulate more focus on hydrocephalus research, to improve the clinical treatments and quality of life for people with the disease and to research the root causes of the condition.

All the money raised in Chattanooga will go toward the Hydrocephalus Association's campaign, McLaughen said.