Fetal Alcohol Spectrum Disorders / Prenatal Alcohol Exposure

Alcohol and other substance use during pregnancy can lead to serious long-lasting consequences for birthing people and infants including miscarriage, still birth, fetal alcohol spectrum disorders (FASD) and neonatal abstinence syndrome (NAS). The Substance Exposed Infants (SEI) Initiative, funded by Connecticut Departments of Children and Families and Mental Health & Addiction Services, created a six year plan to improve Connecticut outcomes for healthy births. This initiative is a joint effort to improve the state's prevention of and response to infants and children exposed to substances in utero and ensure needed attention is given to those who struggle with drug and alcohol use disorders using a multifaceted approach to prevention, screening and intervention.

The Child Abuse Prevention and Treatment Act (CAPTA) was originally enacted in 1974 and reauthorized in 2010 to include a policy requiring states to implement a notification process to DCF when a baby is born who has been prenatally exposed to substances.  The Comprehensive Addiction and Recovery Act (CARA) was signed into federal law in 2016, with the aim to address the problem of opioid addiction in the United States and offered amendments to CAPTA.

Recent changes to federal legislation around the Child Abuse Prevention and Treatment Act (CAPTA) and Comprehensive Addiction Recovery Act (CARA) have outlined new state mandates requiring data collection around the impact of substance exposed infants and development of plans of safe care nationwide. In CT, effective since March 15, 2019, hospitals are now required to submit a notification to the Department of Children and Families CAPTA Notification Portal at the time of the birth event when an infant is believed to have been substance exposed and/or displays withdrawal symptoms.

For additional information:

                SEI-FASD Statewide Initiative

                DCF Newborn Notification Portal (https://portal.ct.gov/DCF/CAPTA/HOME )

                DMHAS CAPTA/Plan of Safe Care (https://www.ct.gov/dmhas/cwp/view.asp?q=607226 )

You can find related information under Prenatal Substance Exposure, and Opioids & Pregnancy.

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What are Fetal Alcohol Spectrum Disorders (FASD)?

Prenatal alcohol exposure, or drinking during pregnancy, can cause fetal alcohol spectrum disorders (FASD).  FASD refers to a range of effects including physical, behavioral and intellectual disabilities.  These conditions are irreversible and lifelong.

FASD includes:

Fetal Alcohol Syndrome (FAS) This is the most severe diagnosis in the FASD spectrum.  To receive this diagnosis, there must be three facial malformations (shortened palpebral fissures, flattened philtrum, and thin upper lip), growth deficiency, and central nervous system damage.  Diagnosis is possible without confirmation of maternal alcohol use during pregnant.

partial FAS (pFAS)  To receive this diagnosis, an individual must exhibit two of the three FAS facial malformations, have central nervous system deficits and a confirmation of maternal use of alcohol during pregnancy. Growth deficiency is not required for this diagnosis.

Static Encephalopathy/Alcohol Exposed (SE/AE) The term "encephalopathy" refers to any abnormal condition of the structure of the brain tissues. The term "static" means the abnormality in the brain is unchanging. To receive this diagnosis, an individual must show severe central nervous system abnormalities and prenatal exposure to alcohol.

Neurobehavioral Disorder-Prenatal Alcohol Exposed (ND-PA)  This diagnosis describes an individual that has moderate central nervous system dysfunction and prenatal exposure to alcohol.

All these disorders include damage to the brain and results in neuropsychological and behavioral dysfunction. These disorders include a wide range of physical, behavioral and learning issues.

An individual with FASD may exhibit the following characteristics or behaviors:

• Babies may be fussy or jittery and have trouble sleeping 
• Birth defects such as heart, bone and kidney problems
• Cranio-facial deformities
• Developmental delay- Does not reach milestones at the expected time
• Hyperactivity
• Impulsiveness
• Lack of coordination and poor fine motor skills
• Learning difficulties in school, especially math
• Low IQ
• Poor attention and concentration
• Poor memory
• Poor problem solving skills
• Poor reasoning and judgement skills
• Poor social skills
• Seizures and other neurological problems, such as poor balance and coordination
• Sleep disturbance
• Small for gestational age or small stature in relation to peers
• Speech and language delays

Diagnosis

FASD is diagnosed based on the child’s issues and symptoms, especially if it is known that the mother drank alcohol during her pregnancy.  In children with milder symptoms, FASD can be difficult to diagnose. Depending on the time during pregnancy when the mother drank alcohol as well as the drinking pattern, the facial deformities and the physical abnormalities of FAS may be absent, making diagnosis difficult. Often FASD symptoms become more obvious as the child enters into elementary school, when learning and behavioral issues become apparent. A child with FASD may be diagnosed with Attention Deficit-Hyperactivity Disorder (ADD/ADHD), Oppositional Defiant Disorder (ODD), or Autism rather than FASD.  A child who is thought to have a FASD may be referred to a developmental pediatrician, genetic specialist, or another specialist who can identify FASD and confirm a diagnosis.

There are several indicators to look for which can help determine whether or not an individual should be referred to a professional for a FASD evaluation.  Some of these indicators include: 

• Academic problems, especially with math and memorizing tasks
• Birth mother with a history of substance use problems
• Difficulty with attention or exhibits hyperactivity
• FAS facial features
• High-risk behaviors or has no fear of danger
• History of prenatal alcohol exposure
• Mental health disorders
• Not meeting developmental milestones
• Raised in foster care and/or adopted due to the birth mother’s substance use disorder
• Unable to connect actions with consequences and cause and effect

Treatment

There is no cure for FASD.  However, there is assistance to help a child reach his or her fullest potential, especially when the condition is diagnosed early.  It is important to have early childhood and youth screening for FASD.  The earlier the child or youth is diagnosed the better.  Having an early diagnosis allows for support systems to be put in place and accommodations made in parenting and teaching.  This will help prevent secondary issues such as mental health problems and future involvement with the criminal justice system. 

Once the child is diagnosed with FASD, there are services available to assist the parent and their child.  Besides early intervention services and support from the child’s school, providing a stable, nurturing, and safe home environment can help reduce the effects of FASD.  Seeking help from medical, psychological and educational services is strongly encouraged.

It can be very helpful for parents or caregivers of a child with FASD to seek guidance and support on coping with the challenges of raising a child with FASD.  In addition, if the parent is struggling with alcohol use, it is important to assist that parent in obtaining the support and care needed to develop a lifestyle free of alcohol use. These disorders should not result in blame, shame or stigma.  FASD is a real disability that affects people from all walks of life.

How can we prevent FASD?

FASD is completely preventable. It is essential that an expectant mother does not consume alcohol during her pregnancy. If she is drinking alcohol during her pregnancy, the sooner she stops drinking alcohol the better it will be for her and her baby’s health.

What if the pregnant woman is unable to stop drinking alcohol?

She can get help by contacting her doctor, her local Alcoholic Anonymous chapter, and/or local alcohol and drug treatment center.

The father and/or current partner of the pregnant woman can play a big part in helping the mother remain alcohol free during her pregnancy. He/she can support her efforts to remain alcohol free.  Family, friends and other support systems can also play a positive role.