NH National Organization on Fetal Alcohol Syndrome (NOFAS NH)

NH Family Voices (NHFV) and the NH National Organization on Fetal Alcohol Syndrome (NOFAS NH) have entered into a partnership of supporting individual and families living with Fetal Alcohol Spectrum Disorders (FASDs) and the organization’s attention to alcohol and pregnancy education and prevention, while also addressing other substances of abuse known to harm fetal development.

Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorders (FASD) is the leading known preventable cause of neuro-developmental disability and birth defects. Through this partnership NHFV and NOFAS NH will strives to educate the public, practitioners and policymakers about alcohol use during pregnancy by disseminating information about the prenatal risks of tobacco, heroin and other opioids, marijuana, cocaine and methamphetamine. NHFV and NOFAS NH are committed to advocating for prevention of, identification of, and early intervention while providing support for individuals and families affected by FASD here in the granite state.

Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual who is exposed to alcohol during the nine month prenatal period before birth. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis.

Diagnostic terms under the FASD umbrella are:

Fetal Alcohol Syndrome (FAS) – all three facial features (shortened palpebral fissures, flattened philtrum, and thin upper lip) must be present, growth deficiency at some point in the individual’s life, and central nervous system (CNS) damage causing deficits in three or more domains. Diagnosis is possible without confirmation of maternal alcohol consumption during pregnancy.

Partial Fetal Alcohol Syndrome (PFAS) – an individual with this diagnosis must have two of the three FAS facial features, and CNS damage causing deficits in three or more domains. Growth deficiency is not necessary for this diagnosis.

Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) – is a new clarifying term, intended to encompass the full range of developmental disabilities associated with exposure to alcohol in utero. ND-PAE can be diagnosed both in the absence and in the presence of the physical effects of prenatal alcohol exposure. The child doesn’t have to have FAS dysmorphology (facial features) to qualify for the ND-PAE diagnosis.

Alcohol-Related Neurodevelopmental Disorder (ARND) – to receive this diagnosis, an individual must display CNS damage causing deficits in two or more domains for this diagnosis. Confirmation of maternal alcohol use during pregnancy is required.

Other terms no longer common:

Alcohol-Related Birth Defects (ARBD)

Fetal Alcohol Effect – never intended as a diagnostic designation

Prevention

There is no safe time to drink alcohol during pregnancy. Alcohol can cause problems for the developing baby throughout pregnancy, including before a woman knows she is pregnant. Drinking alcohol in the first three months of pregnancy can cause the baby to have abnormal facial features. Growth and central nervous system problems (e.g., low birthweight, behavioral problems) can occur from drinking alcohol anytime during pregnancy. The baby’s brain is developing throughout pregnancy and can be affected by exposure to alcohol at any time.

Questions about drinking alcohol during pregnancy? Visit the CDC Alcohol and Pregnancy page.

The CDC’s Alcohol Screening and Brief Intervention Efforts (SBI) is a routine element of health care in all primary care settings to identify and help people who drink too much.

An evidence-based program that works to prevent alcohol-exposed pregnancies is CHOICES: Preventing Alcohol Exposed Pregnancies CHOICES is based on activities that research has shown to be effective.

Guidelines for Diagnosing FAS

Deciding if a child has FAS takes several steps. There is no one test to diagnose FAS, and many other disorders can have similar symptoms. For more detail, see the Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis for healthcare providers and other clinicians.

Resource: Fetal Alcohol Spectrum Disorders Program a program of the American Academy of Pediatrics (AAP) in cooperation with the Center for Disease Control & Prevention, provides a general overview of FASDs. It includes fact sheets, definition of key terms, commonly used resources, an algorithm for the identification and management of children with FASDs, as well as medical/education tools. The Fetal Alcohol Spectrum Disorders (FASD) Toolkit was developed to raise awareness, promote surveillance and screening, and ensure that all affected children receive appropriate and timely interventions.

Treatment

No two people with an FASD are exactly alike. FASDs can include physical or intellectual disabilities, as well as problems with behavior and learning. These symptoms can range from mild to severe. Treatment services for people with FASDs should be different for each person depending on the symptoms.Receiving a formal FASD diagnosis and having a firm understanding of that diagnosis can help families set realistic expectations and facilitate appropriate treatment, intervention and planning. It is important to recognize the value of early home/school intervention. Many of these children have life-long learning and behavioral problems caused by organic brain damage. This is extremely stressful and can be overwhelming for any parent or caregiver. Children with FAS may require a range of specialized social, and educational interventions in addition to medical services in neurology or other specialties.

NOFAS presented a webinar on “Resources for Families Living with FASD: What’s Out There?” with lots of useful practical information on resources and services for people living with FASD.