Emporian leading state’s fetal-alcohol effort as part of CDC grant program
By Bobbi Mlynar
Thursday, July 15, 2010
A state fetal-alcohol syndrome project operated out of the Mental Health Center of East Central Kansas will be spotlighted this month at the Centers for Disease Control and Prevention in Atlanta.
Wes Jones of Emporia will be at the CDC next week to present information about successes at the Emporia clinic, which is the only FAS clinic in Kansas.
He will give an overview of the professionals and their services involved at the clinic and those involved in training that is being done statewide on FAS.
The Emporia connection in the CDC’s fetal-alcohol syndrome effort came in 2001, when officials at St. Louis University contacted the local mental health center to participate in a fetal-alcohol project for a seven-state region. It would be part of a nationwide project to be conducted through grants from the CDC.
“There are also four other grantees that cover multiple states,” Jones said.
Jones is in charge of the Kansas program, including the clinic as well as organizing trainings that take place across the state.
“I tried to get a diverse group across the state to be able to go do the trainings,” he said.
The Kansas Department of Health and Environment and the Department of Corrections are involved as are, for example, a pediatrician and faculty at University of Kansas and Kansas State University institutions, and a nursing students’ curriculum in Emporia.
Jones gave credit to Dr. Jim Barnett for helping get the FAS clinic in place in 2001.
“He was instrumental in our setting up the clinic here, helping get the clinic started,” Jones said.
The multidisciplinary team involved in the clinic took training at the University of Washington on how to perform fetal alcohol syndrome examinations to diagnose cases and recommend treatments.
Other members of the current team are Dr. Bob Stewart, physician; Lanis Houser, clinical social worker; Bev Long, family advocate; Amanda Dreasher, nurse clinician; and Amanda Cunningham, staff psychologist at the mental-health center. Jones said he is trying to recruit a speech pathologist and an occupational therapist to complete the team.
Diagnostic clinics are conducted once a month and, without advertising or marketing the service, appointments for those sessions already are booked into next spring, Jones said.
“We receive referrals from the whole state of Kansas,” he said. “We get a lot of children from foster care, adoptive homes” in addition to children living with their own families.
After a referral, the process from application to acceptance involves completing a packet of information, a psychological evaluation and providing school records, including Individual Education Plans.
“Then we look to schedule them for an appointment,” he said.
And, although diagnosis and treatment plans are important, education also is essential in trying to prevent fetal exposure to alcohol during all stages of development.
“It’s the No. 1 cause of mental retardation in the U.S.,” Jones said. “And, if you think about it, it’s 100 percent preventable, if women don’t drink when they’re pregnant.”
The baby is developing at a rapid and regimented pace during the approximately nine months of pregnancy; it is a time when, for the safety of the baby, a pregnant women must not drink alcohol.
“There is no safe period to drink during pregnancy,” Jones said.
The range of problems that become evident are varied, depending upon the timing and the amount of alcohol consumed. But they are recognizable to professionals as FAS or as fetal-alcohol spectrum disorders, less severe than full-blown FAS.
A child may be born, for example, with noticeably small eyes, an upper lip so thin it is almost a straight line and an indistinct or missing philtrum groove — the indentation running vertically between nose and mouth.
“What that means is probably in the first three to six weeks of pregnancy, the fetus was exposed to alcohol,” Jones said. “That’s when the facial features develop. ...
“Maybe as high as 50 percent of the moms don’t know they’re pregnant,” Jones said of the maternal drinking. “The risk is significant.”
Fetal development is further compromised when mothers continue to drink as their babies move through the stages of development to birth.
“The brain damage that is caused by alcohol exposure is permanent,” Jones said. “It’s just a matter of degrees as to what the level of alcohol exposure was.”
Early signs of FAS or related problems may surface as developmental delays, ear infections or difficult sleep patterns. Learning disabilities, attention deficits and other issues may become apparent as the baby ages toward adulthood.
Most children and adults diagnosed with FAS are not mentally retarded, Jones said, but fall into an average or low-average function; they often struggle with mathematics or learning in general.
Mothers who drink alcohol not only cause difficulties and disabilities for their children to try to overcome, those mothers also are charging heavy costs to society in general.
“When you consider the cost to society, it’s very scary,” Jones said. “The cost estimate to raise a child with FAS probably is close to $2 million.”
The figure includes special services needed for academics, from the legal system, mental health assistance, incarceration, hospitalization and other services.
“Over 50 percent of these children require some type of intensive care ... either incarceration or hospitalization. It might be like a mental health facility or juvenile detention center,” Jones said. “A very high percentage of these kids are going to be involved in special education.”