FASD is permanent brain damage…

May 3, 2013 at 2:39 pm

Check out this article from Brainerd Dispatch:

alcohols,beverages,dances,dancing,expressions,females,glasses,laughing,parties,people,photographs,smiles,smiling,special occasions,womenIt doesn’t take much. Just one drink at any stage of pregnancy can affect a woman’s unborn child. And unlike other hazardous consumption during pregnancy, the damage caused by alcohol doesn’t go away
over time.

It’s permanent.

That’s the message Brainerd resident Peter Johnson and his longtime friend and colleague Jody Allen Crowe of Eagan want to get across to women before they consume alcohol during a pregnancy — that one decision could
change everything.

“If you drink during pregnancy you risk the chance of (causing) permanent brain damage,” Johnson said. “There will be
some effect.”

Brain damage, Johnson said, can include anything from hyperactivity, inattention, concentration, personality, judgment control, intellectual and developmental delay. Other issues include low birth weight, growth impairment, facial malformation, organ damage and respiratory problems.

“When the mother drinks the baby drinks,” he said.

Johnson explained that a developing fetus does not have the capacity to process alcohol as its mother does. The damage comes from its underdeveloped organs working to remove the toxins before they are developed enough to do so.

“It’s like they are just soaking in a bath of alcohol,” he said.

Johnson said studies show most kids will never have a problem with the effects of prenatal alcohol exposure.

“Although, I’m starting to wonder,” Johnson said. “Every time a new report comes out it gets worse.”

Variables like genetics, metabolism, exposure — how much and how often alcohol is consumed — and nutrition can impact the odds that exposure to alcohol may cause lasting damage.

For Johnson and Crowe the message is simple — if a person makes a decision to have a child they need to be responsible with that decision.

“Don’t drink during pregnancy. Period,” Johnson said. “The question is, how do we get that message out?”

Johnson and Crowe founded the Minnesota-based nonprofit Healthy Brains for Children as an effort to help educate others and ultimately reduce the number of women and children affected by Fetal Alcohol Spectrum Disorder (FASD).

Their organization is small and poorly funded. They raise their own money for most of the work they do. Or it comes out of their pockets.

“All the money is focused downstream,” Crowe said. “They are more concerned about the child that is already damaged.”

Despite the odds against them, Johnson and Crowe are determined to change society’s understanding on alcohol use during pregnancy — it’s never OK.

“The message is easy to understand — if people will believe it,” Johnson said. “Will it solve everything? No. Will it solve anything? I hope so.”

The pair said they have found that the biggest reason many drink through their pregnancies is they are simply unaware of the consequences.

“People say, ‘I had no idea,” Crowe said. “Very few people even ask the questions.”

Johnson said prenatal alcohol exposure impacts more people than what is likely assumed.

It’s not illegal. It’s not used in secret. In many cases it might not even be an issue of abuse. Many pregnancies are unplanned and the most vulnerable time for the fetus is from 4-6 weeks gestation — a period when many women may not even know that they are pregnant.

“This is a family problem,” Crowe said. “There are a lot of women who won’t stop drinking and others who just have no idea of the damage they are causing.”

Johnson said he recalls encouraging his wife to drink through her pregnancies, having no idea what damage it could have caused his own children.

“She was my buddy,” he said. “We liked drinking together.”

Johnson said it’s not even alcohol that he has an issue with, it’s how it’s used.

“We are a drinking society,” he said “Nobody’s going to stop drinking. I’m not anti-alcohol, I’m pro-responsible alcohol.”

Having spent years in education as a teacher and administrator in schools throughout northern Minnesota, Crowe said it was his experience in seeing the effects of FASD among his students. Crowe started noticing a pattern among his students with behavior and developmental issues. With alcohol use high among his students’ parents, Crowe made the connection that one might be impacting the other.

“It’s everywhere,” Crowe said. “You just don’t see it.”

Fetal Alcohol Spectrum Disorder (FASD) affects approximately 1 in 100 children according to research conducted by the University of San Diego. Dr. Christina Chambers, has spent 30 years in research, the last 10 years researching the birth defects associated with prenatal alcohol exposure.

Chambers said even with 30 years of diagnosis and more than a decade of devoted research, they aren’t really sure about the numbers.

“We suspect 1 percent is close,” she said.

Even then, Chambers said the best estimate is still 15 years old.

“This is a bigger problem than people realize,” Chambers said in a phone interview. “We know that women are drinking as much or more during their reproductive years.”

Research shows that half of children with prenatal alcohol exposure will have major behavioral issues. Ten percent will end up with developmental delay.

Despite the available facts on the effects alcohol use can have on a pregnancy, Johnson said, women continue to consume alcohol throughout their pregnancies. Johnson cited a study conducted by the University of North Dakota that estimated as many as 70 percent of women in Minnesota consume alcohol during their child-bearing years.

Chambers said part of the issue is with miseducation.

“Clinicians don’t want to scare women,” she said. “Doctors are uncomfortable challenging patients, and it’s difficult to demonstrate a threshold where there is no immediate consequence.”

Typically, issues associated with FASD don’t show up in children until they reach school age when developmental testing begins.

“We think it’s way underdiagnosed, much like Autism Spectrum disorders,” Chambers said.

Chambers said FASD is a medical diagnosis, but has only become so in recent years largely because of a lack of acceptance in the overall medical community.

“It’s one of the most difficult things to get your arms around,” she said. “It’s uncomfortable to feel like they don’t have something that is black and white.”

Crowe blames much of the underdiagnosis on a lack of interest in behavioral change among parents.

“There is so much unwillingness to look at the behavior of the parents,” Crowe said. “A damaged child is less of a concern than a potential life interruption.”

Chambers agreed with Crowe stating that even research is based on information given by the mother.

“People lie,” she said. “There is no way of validating.”

What they do know is the damage caused by prenatal alcohol exposure is permanent. “It’s lifelong,” Chambers said. “It’s not something you take a pill for and it goes away.”

Chambers said the outlook for a child with FASD doesn’t have to be grim. If it’s diagnosed soon enough, early intervention can minimize the effects, and parents can learn ways to deal with behavioral concerns.

“It’s not hopeless there are plenty of early interventions available,” Chambers said. “Earlier diagnosis is better.”

Even with intervention available Chambers agrees with Johnson and Crowe that the best policy is prevention.

“It’s totally unnecessary for pregnancy,” Chambers said of alcohol use. “If there’s a risk associated it makes sense to eliminate it.”

Johnson and Crowe said they will continue their own quest to educate others on the risks of prenatal alcohol exposure. Their efforts include funding pregnancy test dispensers in establishments that serve or sell alcohol.

“We would like to see the dispensers available in bars, convenience stores, school campuses, even social service centers,” Johnson said.

Johnson said pregnancy test dispensers have been placed in restauraunts in Mankato, most recently in St. Cloud and they have had interest from establishments as far away as Texas. They hope to find a location in the Brainerd lakes area in the near future.

The pair said they are certain the dispensers won’t prevent FASD, but it does create a teaching point.

“They start a conversation,” Johnson said. “It makes women stop and think before they buy a drink — it’s something they can actually do something about.”

Entry filed under: Prevention.

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