Tuesday, September 9, 2008

FASD Awareness Day



Today is International Fetal Alcohol Syndrome Awareness Day. We all went to the Capitol to witness the Proclamation signing and to hear Michelle give a speech. All the kids attended as well as Gene & Aunty Leo. Lt. Governor James "Duke" Aiona specifically introduced Michelle. (She gave him a big hug and kiss when she saw him in the briefing room - we still gotta work on those personal space issues). Duke's wife Vivian serves with me as Co-Chair of the State FAS Task Force. She is also pictured. There were many others there too.

This is what Michelle said in her speech. She wrote her speech herself.
(I held up the signs cause sometimes its hard to understand her)

My name is Michelle Wright.
I am 11 years old.
I like swimming, pizza and babies.
When I grow up I want to be a nurse.
I have Fetal Alcohol Syndrome.

My birth mother drank alcohol when I was in her tummy.
Alcohol hurt my brain.
But my brain is getting better now.
I am happy to meet all of you.

Michelle did a great job with her speech. She was also very excited about having on a new dress and new shoes - but complained that the shoes were too hot. She also got a hair cut for the occasion. She wanted to get her nails done too but I said no to that one. We are very proud of her.

FASD (and Michelle) in the News

The following appeared in today's Honolulu Advertiser:

For baby's sake, avoid alcohol

Drinking in pregnancy can cause permanent brain damage in fetuses

Even a single drink of alcohol during pregnancy can cause fetal alcohol syndrome in an unborn baby.

To spotlight that danger, the state will participate in an international awareness day on the disorder today, Sept. 9 — a date that represents the nine months from conception to birth.

In Hawai'i, 89 children were diagnosed with the disorder from 1986 to 2003, said Dr. Catherine Sorenson, state Department of Health's coordinator on fetal alcohol spectrum disorder, the umbrella term for the disorder. But the number of undiagnosed victims is believed to be much higher — more than 13,000 children and young adults may be affected in Hawai'i, Sorenson said.

The average lifetime care costs for a child with the syndrome is estimated at $2 million.

"It is very difficult to diagnose in an infant," Sorenson said. "There is no information on how much alcohol is too much."

Babies exposed to alcohol in utero can suffer permanent brain damage. Other indications include mental retardation and learning disabilities; kidney problems; fused, webbed and missing fingers and toes; small body size; organ deformities; and a curved spine. Since 1990, every bottle of beer, wine and spirits sold in the U.S. must carry a warning from the U.S. surgeon general of the risk of birth defects.

"Fetal alcohol syndrome is completely preventable," said Ginny Wright, whose daughter, Michelle, was diagnosed when she was 4. She's 11 now.

"Just don't drink while pregnant," Wright said. "This is a disorder that affects brain development, permanently."

Wright said that when she adopted her daughter, her face looked different than a typical toddler's face. Later those differences — an extremely narrow upper lip and a flat ridge between her upper lip and nose — would help doctors diagnose her fetal alcohol syndrome, said Wright, who lives in Kane'ohe.

When Gigi Davidson, a Makiki mother, adopted her son, Jenya, from Russia, she knew that her son's biological parents were alcoholics. But it took years for her to get a physician to link his mental health issues to fetal alcohol syndrome, Davidson said.

Her son is now 20. He has gone to 10 different schools in Hawai'i, often getting kicked out because of poor judgment. Now she hopes she can keep him out of trouble, and off drugs and alcohol, until his brain matures more.

"My son is a socially charming, cute kid," Davidson said. "But he's impulsive and lives for the moment. Looking back, I didn't know that he didn't have the capacity to think abstractly. Now I realize how hard everything had to be for him."

Dr. Laurie Seaver, medical director of Hawai'i Community Genetics, said the disorder can be obvious like Wright's daughter's physical traits, or not so obvious, as with Davidson's son's attention deficit disorder.

"Many physicians are not familiar with fetal alcohol syndrome, so many individuals, especially older individuals, remain undiagnosed," Seaver said. "The problem is caused by the alcohol actually getting into the bloodstream of the developing fetus from the mother's bloodstream. Alcohol kills developing cells, especially brain cells."