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Utah woman with fetal alcohol syndrome strives to raise awareness

Utah woman with fetal alcohol syndrome strives to raise awareness

By Wendy Leonard | Posted - Sep. 9, 2011 at 3:43 p.m.



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SALT LAKE CITY — No one knows the nine-month, no alcohol mantra better than a pregnant woman, but up to 1,300 Utah babies are likely being born each year with potential for fetal alcohol spectrum disorders.

"Rates of fetal alcohol spectrum disorders are higher than those of Down syndrome, cerebral palsy, cystic fibrosis, spina bifida and sudden infant death syndrome," said Dr. Al Romeo, counselor with the Utah Department of Health pregnancy risk hotline.

One Utah woman wants everyone to know that it is entirely preventable.

"This didn't have to happen to me," said Ruth, a woman born with brain damage, a hole in her heart, fused wrist bones, a cleft lip and several other defects.

She survived two heart attacks at a very young age, has lived through countless seizures and still lives with endless pain due to continual surgeries.


Rates of fetal alcohol spectrum disorders are higher than those of Down syndrome, cerebral palsy, cystic fibrosis, spina bifida and sudden infant death syndrome.

–Dr. Al Romeo


"I've learned not to feel sorry for myself and I just accept what happened to me," she said.

Ruth, who is now a functioning and happy adult, was placed into a foster care program for special needs children as a baby and was adopted a few years later. Her parents helped her to have a positive attitude, but Ruth's daily life has been greatly impacted by her own mother's choice to consume alcohol throughout her pregnancy.

The CDC has reported that there is no known safe amount of alcohol to drink while pregnant, as well as no safe time during pregnancy to drink and no safe kind of alcohol.

Two percent of Utah women recently reported that they drank five or more alcoholic drinks in one sitting at least once during pregnancy, according to the Utah Pregnancy Risk Assessment Monitoring System survey, a confidential questionnaire issued to one in 18 expectant Utah women.

The information obtained from the survey is used to improve the health of Utah mothers and babies, as well as to push better health policies on a state level.

Effects of Fetal Alcohol Spectrum Disorders
  • Abnormal facial features, such as a smooth ridge between the nose and upper lip (this ridge is called the philtrum)
  • Small head size
  • Shorter-than-average height
  • Low body weight
  • Poor coordination
  • Hyperactive behavior
  • Difficulty paying attention
  • Poor memory
  • Difficulty in school (especially with math)
  • Learning disabilities
  • Speech and language delays
  • Intellectual disability or low IQ
  • Poor reasoning and judgment skills
  • Sleep and sucking problems as a baby
  • Vision or hearing problems
  • Problems with the heart, kidney, or bones
  • Recently, the UDOH partnered with the state Department of Alcoholic Beverage Control to put up warning signs at all state-run liquor stores and other locations where alcohol is served.

    Friday, the ninth day of the ninth month, was noted in Utah as Fetal Alcohol Spectrum Disorders awareness day, supporting international activities to remind pregnant women to protect their child by abstaining from alcohol during the nine months of pregnancy.

    Substance abuse treatment and support resources are available statewide for women who are pregnant and struggling with alcohol dependence. More information can be found online, at www.dsamh.utah.gov, or by calling 801- 538-3939.

    Many times, the disabilities resulting from fetal alcohol spectrum disorders are invisible, especially in adopted children who don't have a medical history from their biological parents readily available, as Utah parents Terra and Jeremy learned.

    "FASD was not part of our vocabulary until Briar came along," the couple told the Utah Division of Substance Abuse and Mental Health. "It is a disability that is 100 percent preventable and that is why we feel so passionate about sharing our story."

    For more information...
    More information can be found online, at www.dsamh.utah.gov, or by calling 801- 538-3939.

    Pregnancy Risk Line: 1-800-822-2229, 8 a.m. to 5 p.m., Monday through Friday

    Their daughter will live with brain damage for the rest of her life, but the couple is hoping to use her story to raise awareness of FASD.

    The statewide Pregnancy Risk Line, 1-800-822-2229, is a free and confidential information service available to anyone seeking answers to questions about medications, drugs, chemicals and other environmental exposures that could harm an embryo, fetus or infant. It is available during business hours 8 a.m. to 5 p.m., Monday through Friday.

    Email:wleonard@ksl.com

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    Wendy Leonard

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