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What a birth mother wants paediatricians to know about diagnosing a fetal alcohol spectrum disorder
  1. Vincent Smith1,
  2. Kenneth Jones2
  1. 1 Pediatrics Division of Newborn Medicine, Boston Medical Center, Boston, Massachusetts, USA
  2. 2 Department of Pediatrics, University of California San Diego, La Jolla, California, USA
  1. Correspondence to Dr Vincent Smith, Pediatrics, Boston Medical Center, Boston, MA 02219, USA; vincent.smith{at}bmc.org

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Introduction

In England and Scotland, 24% of adults regularly drink over the chief medical officer’s low-risk guidelines, and 27% of drinkers in Great Britain binge drink on their heaviest drinking days.1 A recent article2 suggests 41.3% of pregnant women in the UK consume alcohol at some point during pregnancy, which can be extrapolated to a modelled estimate prevalence of fetal alcohol spectrum disorders (FASDs) of 3.2%.

Prenatal alcohol exposure (PAE) is the leading preventable cause of intellectual and developmental disabilities in the world.3 FASDs result from PAE. The shame and stigma of drinking during pregnancy and the fear of losing their children often prevent women from honestly disclosing their usage histories with their child’s paediatrician. Keeping these ‘secrets’ about alcohol consumption makes it difficult to make a correct diagnosis in children and can lead to relapse, stress, depression, anxiety and an escalation in drinking.4 Women should not be blamed or shamed when they expose a pregnancy to alcohol or other substances.4

A conversation with a birth mother

Hearing the words ‘Your daughter has fetal alcohol syndrome’ hit me like a tsunami. I was drowning in waves of grief, disbelief, horror and remorse. In 1984, my daughter was born full-term weighing 5 lbs 12 oz. I went home from the hospital with a small but perfectly normal baby. The first two years we experienced many delayed milestones: she crawled, walked, and talked late. Her first pediatrician used to tell me ‘there is something not quite right about her, but I just can’t put my finger on it’. That used to bother me so much because to me she was simply perfect.

When I took her to the new doctor for her 2-year check-up, I was asked all the typical milestone questions which I answered honestly. At one point, the pediatrician asked me if …

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Footnotes

  • Contributors The corresponding author shared the responsibility for writing and revising the manuscript as well as making sure that all authors approve the final manuscript as submitted. KJ is the principal investigator for the collaborative work for alcohol-free pregnancy and provided content, insight and review for the article.

  • Funding This publication was supported in part by the Cooperative Agreement Numbers, NU3OT000282, 5U58DD000587 and NU01DD001144, funded by the Centers for Disease Control and Prevention.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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