By Walker Karraa, MFA, MA, CD(DONA) with special contribution by Sonia Alvarado, MPH, University of California, San Diego
This past week, I had the good fortune to hear former first lady Rosalynn Carter deliver the keynote speech at the Marce/PSI conference on perinatal mental health. Mrs. Carter has devoted her life's work to helping those most vulnerable in our society, the mentally ill. While her work has been on the full spectrum of mental illness in our society, her experience speaks directly to those of us who have had a mental illness in the perinatal period, preconception through one year post delivery. Her message was clear: End Stigma. In her new book, "Within Our Reach: Ending the Mental Health Crisis," Mrs. Carter explains,
"Stigma is the most damaging factor in the life of anyone who has mental illness.
"This could not be more true for women in childbearing years. I vividly remember being 8 months pregnant, picking up my medication from a local grocery store pharmacy where the clerk questioned me as to my knowledge of the "risks" of taking medication while pregnant. My neighbor was in line behind me. I was humiliated, and demoralized regarding my treatment.
Mrs. Carter is quick to point out that the power of stigma to keep us from gaining the information we need to be well and potentially save our lives.
We are not unaccustomed to stigma in the birth world. We have used our voices and each other to make great strides to end stigma of breastfeeding in public, and having non-medicated childbirths with doulas if we wish. And it has been reassuring, good information which has helped us fight those battles. This is where my friend Sonia comes in, and the word, "Teratology.
"Teratogen Information Specialists (TIS) play a crucial role in arming childbearing women with information regarding the risks and benefits of environmental exposures, over-the-counter medications (OTC), prescription medications, and herbal supplements.
Given the fact that higher than 80% of women take at least one dose of medication (exclusive of vitamins) during pregnancy1, we deserve the right to utilize teratogenic services to learn of the efficacy, risks, and benefits of in pregnancy and breastfeeding.
I am delighted and grateful to have interviewed Sonia Alvarado, Teratogen Specialist, Supervisor at the University of California San Diego, as she offers how you can easily access this information and make a truly informed choice.
Walker: What is a teratogen?
Sonia: A teratogen is an environmental agent that has been found to cause a specific pattern of birth defects after exposure during pregnancy. The agent could be a drug (prescription, over-the-counter, illicit, etc.), illness, chemical or radiation. Although teratogens are associated with a specific pattern of birth defects, not every affected infant will necessarily have all of the features. For example, a drug may be associated with five features, and some infants will have five and others may have only two. Finally, not every embryo or fetus is affected by an exposure during pregnancy; usually, its a percentage of embryos' or fetuses.
Walker: What is a teratogen information specialist (TIS)?
Sonia: Teratogen Information Specialists or counselors are trained to evaluate an exposure(s) using medical evidence, including published research, and using established scientific principles including teratology principles.
Walker: Are you funded by pharmaceutical companies?
Sonia: No, the California Teratogen Information Service (CTIS) is funded by the State of California, Department of Education. The funding is constant every year.
Walker: What happens when a person calls the CTIS hotline? (800) 532-3749
Sonia: Every person who calls can expect a caring and interested voice at the other end. Risk assessments are based on the scientific evidence and teratology principles. We ask details about the pregnancy, including last menstrual period, number of pregnancies, spontaneous abortions (miscarriage), terminations, and stillbirths. We ask details about the exposure, including dose, timing (dates), frequency, etc. We ask for a first name and zip code, race/ethnicity only for demographic purposes, however, no one is required to give demographic information for the service as the service can be provided anonymously. We like to do an intake that includes exposures to other agents that may be a concern, such as fever, alcohol, cigarettes, etc. We offer information on recommendations such as flu and pertussis vaccines. Finally, a summary letter of the information we provide can be mailed or emailed to the caller.
Walker: What is one of the most common calls you receive?
Sonia: The most common calls are about hair color or other cosmetic products, and pesticides. The most common prescription call is about antidepressants. Most of our contact is through the telephone, however, we do have e-mail service available through our Website, and coming soon, we'll have live chat available as well, during program hours (Monday through Friday, 9 am to 5 pm).
Walker: Can a mom take the fact sheets from the Website to her care provider/or have them call you?
Sonia: Absolutely! We welcome calls from health providers as we know that most are too busy to look up the research related to specific exposures. Additionally, by taking the fact sheets to the doctor or nurse, we help facilitate the care the pregnant woman needs and should receive.
Walker: Can you give us an example of a caller's story?
Sonia: This service has been the recipient of literally hundreds of thousands of calls over the years and every call is absolutely important. Some women however, have stories so compelling that they stay in our memories forever.
Such was the case of a health professional who called our service. She called because she had received an emergency medication treatment for what was thought to be an ectopic pregnancy at the emergency department of a hospital. The medication was intended to save her life and terminate the pregnancy which was located in the fallopian tube. Her voice was steady, resigned even, as she explained that the treatment had been given in error. She did not have an ectopic pregnancy. It had just been too early to see her embryo on an ultrasound. We went over her exposure and we talked about the number of birth defects that were possible as a result of the exposure. We also talked about the potential that her baby might not be affected. She opted to continue her relationship with us through our follow up program.
During the pregnancy, she discovered that her baby did have birth defects, the range of which only became apparent after she delivered. Unfortunately for her, and her baby, the defects were devastating and her baby girl died a few months after delivery, after many medical interventions. Although this story has a tragic ending, the mother let us know on several occasions that she appreciated having the counselors on our end to talk to. She found some comfort in giving us updates on her child's health -- both during the pregnancy and after delivery. Additionally, she enrolled in one of our studies during the pregnancy, which allowed her experience to be used as part of our on-going research. She recognized that her experience was not unique and most likely would happen in the future to another woman. She wanted to contribute to the knowledge that we have about medication use in pregnancy to help us counsel more precisely and to help other women in the future.
Fortunately, most of our calls do not result in our having to deliver risk-assessments involving birth defects, and instead, most of the time, we are providing reassuring information.
With reassuring, evidence-based information, we can overcome any societal myth or stigma regarding our choices in pregnancy, birth and postpartum. Visit www.ctispregnancy.org today and see what you think!
California Teratogen Information Service (CTIS) Pregnancy Health Information Line is California's only information service that provides FREE up-to-date and evidence-based information about the possible effects of:
- Medications (over the counter and prescription)
- Herbal supplements (vitamins, herbal preparations)
- Infections or diseases (i.e. pertussis, herpes)
- Recreational substances (i.e. alcohol, marijuana)
- Chemicals (i.e. hair dye, paint, cleaning products, cosmetics)
- Physical Substances (i.e. X-ray)
These may affect the baby during pregnancy or while breastfeeding. CTIS experts are available to answer questions Monday !! Friday via the toll-free hotline (800) 532-3749 or online at www.ctispregnancy.org. CTIS is a non-profit funded by the Department of Education and based at the University of California, San Diego School of Medicine, Department of Pediatrics.
The national partner of CTIS is OTIS www.otispregnancy.org
- Headley J, Northstone K, Simmons H, Golding J, ALSPAC Study Team. Medication use during pregnancy: data from the Avon Longitudinal Study of Parents and Children. Eur J Clin Pharmacol 2004; 60:355-61.
Sonia Alvarado has been a bilingual (Spanish/English) Teratogen Information Specialist with the California Teratogen Information Service (CTIS) Pregnancy Health Information Line for 11 years. Along with answering women's and health professionals' questions regarding exposures during pregnancy/lactation via CTIS' toll-free hotline and email service, she provides educational talks regarding pregnancy health in community clinics and high schools. In addition, Sonia contributes to the service's website, develops training materials for new CTIS staff, and is the supervising Teratogen Information Specialist trainer. In her spare time, she loves to volunteer with the March of Dimes as an expert speaker on themes related to pregnancy.