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Path to a Prognosis—Part One

This is the third part of my story of the One Thing I Said I’d Never Do,namely, adopting a child with known prenatal alcohol exposure. We were stunned to learn that our daughter’s biological sister had been heavily exposed (find this second blog here). The baby in question being Meg’s sister complicated things considerably. How could we not at least consider it?

We sent Regina’s medical record, measurements, and photos to the adoption and fetal medicine clinics at our local university medical center, which happens to be the university where much of the initial identification of and research on Fetal Alcohol Syndrome was done.

Meanwhile I began to read everything I could get my hands on. Prenatal alcohol exposure affects babies differently depending on the timing and amount of alcohol taken, and likely on other factors we don’t know about. As with many conditions, some individuals seem very affected after modest exposure and others at higher risk seem resistant to harm.

Formerly researchers spoke of Fetal Alcohol Syndrome, which manifests in specific facial differences and usually an IQ in the mentally retarded range, and Fetal Alcohol Effect, meaning there were no characteristic facial features but there was a pattern of cognitive, sensory and behavioral issues. Later realizing that sometimes symptoms could be just as bad in FAE sufferers as in those with the characteristic facial features of the full-blown Syndrome, doctors now use the term Fetal Alcohol Spectrum Disorder (FASD) or Alcohol-Related Neurodevelopmental Disorder.

Attempts to standardize diagnosis have resulting in a Likert scale rating of features and risk factors. This means assigning each feature or risk factor a number on a scale of 1 (low risk or normal features) to 5 (high risk or grossly malformed feature) and then combining them. Wikipedia contains a thorough explanation which can be accessed by clicking here. (I am aware that anyone can post almost anything on Wikipedia, but from my other research I believe this is a good article.)

Three items looked for in diagnosis are small body and head size suggesting growth retardation, known alcohol exposure, and facial features, in particular the upper lip, the philtrum or groove above the upper lip, and eyes. The facial features themselves are each assigned a point value, with one being normal and five having all the characteristics of FAS.

Please see this related blog:

At Least–3 Reasons Not To Drink While Pregnant

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About Pam Connell

Pam Connell is a mother of three by both birth and adoption. She has worked in education, child care, social services, ministry and journalism. She resides near Seattle with her husband Charles and their three children. Pam is currently primarily a Stay-at-Home-Mom to Patrick, age 8, who was born to her; Meg, age 6, and Regina, age 3, who are biological half-sisters adopted from Korea. She also teaches preschoolers twice a week and does some writing. Her activities include volunteer work at school, church, Cub Scouts and a local Birth to Three Early Intervention Program. Her hobbies include reading, writing, travel, camping, walking in the woods, swimming and scrapbooking. Pam is a graduate of Seattle University and Gonzaga University. Her fields of study included journalism, religious education/pastoral ministry, political science and management. She served as a writer and editor of the college weekly newspaper and has been Program Coordinator of a Family Resource Center and Family Literacy Program, Volunteer Coordinator at a church, Religion Teacher, Preschool Teacher, Youth Ministry Coordinator, Camp Counselor and Nanny. Pam is an avid reader and continuing student in the areas of education, child development, adoption and public policy. She is eager to share her experiences as a mother by birth and by international adoption, as a mother of three kids of different learning styles and personalities, as a mother of kids of different races, and most of all as a mom of three wonderful kids!