Commentary: Creating a Circle of Hope to Prevent Fetal Alcohol Syndrome Disorders

Kathleen Tavenner Mitchell, Vice President and National Spokesperson for the National Organization on Fetal Alcohol Syndrome, explains why she founded The Circle of Hope, a mentoring program for birth mothers of children with Fetal Alcohol Syndrome Disorders.

One does not have to be an alcoholic to give birth to a child with effects from drinking while pregnant, but it is clearly understood that women with addictive disorders, such as alcoholism, are the highest risk group for having children with Fetal Alcohol Spectrum Disorders (FASD). In an effort to prevent FASD and provide hope and support for women that have used substances while pregnant, and in my role as Vice President and National Spokesperson for National Organization on Fetal Alcohol Syndrome (NOFAS), I founded a mentoring program for birth mothers of children with a FASD, the Circle of Hope (COH). The COH was formed in 2004 with a handful of members and has grown to include hundreds of birth mothers from across the world. Members are referred to as “Warrior Moms,” reminding them of their strengths and their important role as their child’s advocate.

The COH mission is “to increase understanding and support, and strengthen recovery, for women who drank during pregnancy, and their families.” The goals are to improve and strengthen the lives of birth families, provide them with peer support and decrease the stigma, blame and shame that birth families may experience.

The Stigma of FASD
Both alcoholism and FASD remain highly stigmatized disorders. Stigma and shame can lead to relapse, stress, depression and anxiety and an escalation in drinking. Faced with the prospect of stigma, women who drink during pregnancy may deny they have a problem and be reluctant to pursue a diagnosis for their child. The stigma is probably one of the major reasons why the majority of children who have received a diagnosis of FASD live in adoptive or foster care homes. Recognizing that your child lives with a disability because you drank during pregnancy is a painful realization. Birth mothers typically experience significant guilt, shame and remorse. The diagnosis suggests intentional harm by a mother. In reality, there are many different reasons why women drink during pregnancy.

According to a 2012 NOFAS survey of 96 COH members, here are the top reasons women drank while pregnant:
• “I thought using alcohol was safe. My doctor never told me I should not be drinking.”
• “I didn’t know I was pregnant. I stopped as soon as I found out.”
• “I am an alcoholic. I couldn’t stop, and was ashamed to look for treatment.”
• “I was afraid to look for help. I was afraid I would be arrested and I would lose my children.”

Unfortunately, most people still believe that birth mothers “should have known better.” Having a birth child diagnosed with a FASD is like being branded with a Scarlet Letter. The family faces continuing shame and stigma as well. The COH offers women a safe and reassuring environment with other women who share their experiences and have a desire to restore their lives.

Women Supporting Women
Women who have exposed pregnancies to alcohol or other drugs, suspect their child may have a FASD or are going through the FASD diagnostic process for their child need support and encouragement. It is especially beneficial to have support from another woman who has been there. Once a woman contacts the COH, she is provided a mentor. COH mentors not only provide a shoulder to cry on, but also a strong helping hand to keep them on a path of recovery. The values guiding the network are confidentiality, honesty and integrity of all members, reducing the stigma of FASD, and assuring a safe environment for women to speak honestly about their past.

For the Addiction Professional
The research is very clear on the importance of obtaining a correct diagnosis, the earlier the better, for children that have been exposed to alcohol. FASD is not a topic that addiction counselors, social workers or other mental health professionals typically receive training in. Professionals supporting birth families may believe that a child’s behavioral issues are environmental or emotional effects from an alcoholic family environment, not understanding that the child may actually have brain damage. Most individuals with a FASD will score in a normal IQ range but may experience deficits in attention, memory, executive functioning and behavioral and/or emotional disorders. Certainly the stress and trauma experienced in a chaotic family environment can compound many of the behavioral issues characteristic in children with a FASD, resulting in more severe outcomes.

It is important for birth families to receive appropriate counseling and support so they can face the many issues that arise with having a loved one with a FASD. Addiction professionals can refer clients to the NOFAS website to locate FASD diagnostic centers or other service providers. For professionals treating a woman who has used alcohol, or other drugs while pregnant, refer them to www.nofas.org/join-the-circle-of-hope.

To learn about the NOFAS FASD Curriculum for Addiction Professionals, contact me at Mitchell@nofas.org.

Kathleen Tavenner Mitchell is the Vice President and International Spokesperson for the National Organization on Fetal Alcohol Syndrome (NOFAS) and a noted speaker and author on Fetal Alcohol Spectrum Disorders (FASD) and Women and Addictions. She is the founder of the Circle of Hope, an international peer mentoring program for birth mothers of children with FASD.