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>What are the Odds My Child Escaped Unscathed?

April 27, 2011

>Conservative estimates are that 75% of children recently adopted from Korea were prenatally exposed to alcohol. Other estimates place it as high as 90%. That makes the burning question in the Korean adoption community, “What are the odds my child escaped prenatal alcohol exposure unscathed?”

Just yesterday, answering a question about our experience getting an FASD diagnosis, I observed, “I don’t know if [Hope] is once-in-a-blue-moon, or if there may be other families like ours out there struggling” who don’t realize what they’re dealing with. I meant: I don’t know how rare Hope’s case is because I haven’t yet been able to find research data following outcomes in at-risk kids.

That just changed.

I just added the e-journal Fetal Alcohol Research (FAR) to my Index of links on fetal alcohol exposure. In the FAR archives, I found a 2010 article by Susan Astly profiling the first 1,400 children with known prenatal alcohol exposure to come through the doors of the United State’s flagship Fetal Alcohol Spectrum network, the Washington State Fetal Alcohol Spectrum Diagnostic & Prevention Network. These children were seen between 1993 and 2005 and the data generated by a computer database. The results were:

  • 11% were diagnosed with FAS or PFAS (Partial FAS) *
  • 28% were diagnosed with “static encephalopathy” –permanent brain damage
  • 52% were diagnosed with a neurobehavioral disorder, like ADHD or learning disabilities
  • 9% showed no evidence of any central nervous system (CNS) abnormality

Be sure to click the link at the bottom of the summary page for the full text of this article.

There are some significant points in the full article that contextualize the summary findings. The 1,400 children studied were presented by their parents or caregivers for evaluation. This is significantly different than, for example, if 100% of Korean adopted children with known PAE (prenatal alcohol exposure) were proactively screened for potential effects of exposure. Instead, presumably, some level of concern prompted the fetal alcohol evaluation. The study does not detail the source or the threshold of concern.

But among exposed children about whom there was some concern, only 9% had no clinically discernable effects of their exposure.

That reminded me of our discussion in the comments on this post  FASD in the toddler years. The consensus of moms was that they knew something was very different about their exposed toddler long before anyone else believed them. I think this study suggests that when moms feel concern about their child with known exposure, most of the time, an evaluation will confirm their concern with clinically significant findings.

I highlighted the 11% FAS/PFAS finding  with an * to point out one of the frustrations of interpreting older research on FASD. Uniting all FAS diagnoses under the umbrella term “FASD” (Fetal Alchohol Spectrum Disorder) is comparatively recent. The author clarifies on page e137 of the PDF that all but the 9%  of the children with no CNS findings would fall under the FASD umbrella today. The percentage spread of outcomes does not mean that only 11% have an FASD, but that 91% of the children studied have an FASD.

I guess that makes the next burning question: How many adoptive families of exposed kids have gnawing undiagnosed concerns about their child? Do they know that an FASD evaluation should be their first, not their last, resort?

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