Birth Defects: Environmental Science and Advocacy

July 15, 2003
2:00 pm US Eastern Time

Call Notes

Facilitator: Steve Heilig, MPH, Co-Director of CHE and Director of Public Health & Education, San Francisco Medical Society

1. Science Update: Ted Schettler, MD, MPH, Science Director, Science and Environmental Health Network

A recent conference in the UK looked at fetal origins of disease in adults. The so-called Barker Hypothesis, generated years ago, primarily addresses the idea that fetal nutritional factors have an impact on subsequent adult disease risk. Most work has looked at heart disease and diabetes. We now know that many factors are important in development. Dr. Ricky Perrera recently published data showing how maternal stress can interact with exposures to toxic chemicals leading to such things as low birth weight and smaller head circumference. We are also learning a lot recently about birth defects and the impacts of pesticides on the developing brain. There is a consensus developing around the fetal origins of testicular cancer, and similarly the seeds of prostate cancer can be sown early in life. With regard to nutrition, animal data show that maternal diets high in certain kinds of fatty acids can lead to earlier onset of puberty, altered mammary gland development, and increased mammary cancer risk after exposure to a carcinogen in offspring.

In summary, the early-life origins of many diseases are increasingly being supported by science.

Phil Lee: Clyde Hertzman at the University of British Columbia is also doing much work in the area of the impacts of social environment during pregnancy and infancy. Some of this work can be found at www.earlylearning.ubc.ca.

2. Science Update: Pete Myers, PhD, Senior Advisor, United Nations Foundation

One group at the UK meeting focused on fetal origins of adult obesity. And there will be a meeting in Canada in 2 years, which will look more specifically at fetal exposures to chemical contaminants and adult disease. CHE might want to have a speaker there.

Two studies on birth defects have come out in the last two weeks, one on herbicides and birth defects and the risk in wheat-growing areas of a variety of birth defects. The case is strong as an ecological study, but alone doesn’t prove the association is causal. However, viewed with other work, a causal relationship between pesticides and birth defects is increasingly persuasive. The second study recently published in Nature Medicine, looks at the levels at which cadmium changes patterns of development in estrogenic responses. Estrogenic impacts were detected with extraordinarily low tissue levels of cadmium. There are links to both of these papers on the website www.protectingourhealth.org.

Steve Heilig: The immediate industry response on the herbicide study demonstrates the political dynamic of this subject.

3. First Speaker: John Harris, MD, MPH, Program Chief and Co-Founder, California Birth Defects Monitoring Program

The California Birth Defects Monitoring Program includes as birth defects congenital anomalies such as cleft palate, Down syndrome or mental retardation. We've been doing studies for the past 10-15 years, and we have a registry of children with birth defects taken from over 150,000 births. Every newborn in California has a blood spot (biologic specimen) obtained. We look at these and interview parents of children with birth defects and try to identify possible environmental factors. Air pollution and nutrition can play a role.

The California Birth Defects Monitoring Program operates on 2 principles: 1) Most environmental chemicals have been insufficiently looked at, and most people are exposed to a mixture of toxins. 2) There's been a lot of mythology that birth defects are purely genetic, but that's not the case at all. We look at genetic-environmental interactions; genes needing to be triggered by an environmental factor. For example: we found a specific gene present in 14% of the population. If you smoke and have that gene, then you have an eight-fold risk of having a child with cleft palate. If you have that gene, but do not smoke, there is no increased risk.

Currently, the CDC is funding 8 centers to interview people with birth defects. In the next 5 years, we’ll see lots of data proving or disproving the relationship of birth defects to environmental exposures.

4. Second Speaker: Betty Mekdeci, Executive Director, Birth Defect Research for Children, Inc.

Advocacy comes from a family's frustration and inability to get help and answers. Policy comes when enough families become frustrated with an issue and come together to begin addressing it. The difficulty is that there are so many different kinds of birth defects that it's hard to get everyone to come together around one defect.

My son was born with birth defects 28 years ago. I had numerous questions, but didn't get answers until I worked with the FDA. Then I started Birth Defect Research for Children, which provides service in 2 areas: 1) We gather information about birth defects and link families so they can join together to start thinking about advocacy. 2) We also began a birth defect research project.

Researchers found distinctive patterns of identification, so we did confirmatory research and entered them into a database to look at the larger picture. We had 7 highly qualified scientists involved in this. When affected community members contact us, we send questionnaires and then help the community investigate common factors.

Judith Cude contacted us about Cleft Palate cases in her community of Dickson, TN. She has been working to get families together to find answers. We worked to identify this cluster, contacted the CDC, and got the EPA to reevaluate a landfill. It’s still difficult to get most birth defect groups to look at causation when they're dealing with emotional and financial problems.

5. Third Speaker: Judith Cude, Director, Honey Tree Christian Day Care, Grandmother of child born with a bilateral cleft lip and palate and a heart defect

When Judith's grandson was born she was told that his birth defects were hereditary. She did some research and found this was not the case. She was told this happened to 1 in 1000. Those figures dropped to 1 in 500 in the second birth.

Judith started doing research and in 4 months she found 5 babies within the same community with the same birth defects. She made numerous phone calls, including the CDC and the Dickson County Health Dept, but was put off by everyone. Then she called Betty Mekdeci. They found, out of a birth population of 1,800 over a 3-year period, 19 babies were born with cleft lip and/or cleft palate and 4 were born with ACC, (a serious brain defect).

They discovered that the public water system had been contaminated with TCE. The cancer level in Dickson has tripled in the last 10 years, and pediatricians were saying that the amount of ADD and Asthma has risen significantly.

Judith formed a group called Tennessee Citizens for the Environment (TCE) to try to get the message to Dickson Residents. They have had some exposure locally, and although they are not popular with the mayor, or commissioners, they have recently found a state senator who has only just begun to talk to them. They still need national exposure.

A Nashville medical college will be coming to try to identify these causes. A Dickson company had been dumping TCE in the landfill, but has since moved to another community. Now it's happening there, where there are 4 babies with ACC, 2 of them living on the same street.

6. Questions and Comments

Phil Lee: Judith, have you been in touch w/ Senator Frist of Tennessee? He claims that he is very interested in people’s health and he's a physician.

Judith Cude: We have, but we have had no response.

Elizabeth Sword: Judith, given your experience, what would you advocate for others in your position to make the most headway?

Judith Cude: We didn't get anywhere until we contacted Betty. I work with mothers at the daycare and we recommend pre-natal care, an ultrasound, and drinking bottled water.

Ted Schettler: John, having faced some of these cluster communities in the past, do you have any suggestions?

John Harris: In general, our approach is to take these things seriously right away. But, epidemiologists don't generally like to do this when there's only one point source, because the sample is insufficient. So, we would try to study TCE in the water in a broader area. Then I would call the CDC and ask if they have studied TCE in the water.

Betty Mekdeci: We did do the research on TCE and cleft palate. I would like to commend California for all the work they have done with birth defects.

Ted Schettler: This description has a lot of the frustrating factors of so many. It's hard to find the numbers to prove it statistically. To what extent will we continue to have this discussion? Are we accepting the premise that there has to be a cause before we can take action? How is that likely to change over time as we learn more about gene-environment interactions? Will we continue to need to provide proof of harm before we take preventive actions? Proof of harm is difficult to demonstrate until significant damage has been done. This frustration is repetitive historically and will continue to be so. We need a more enlightened policy with regard to the use of industrial compounds.

Roy Ozanne: In my 20 years as a general practitioner I have seen many of these kids, but there's a lot of treatment that can be done beyond conventional medicine. We know that our environment has become poisonous, we need to learn how to protect ourselves. We also need a larger scale political and scientific direction toward a Precautionary Principle. The benefits from these toxic things are getting smaller as compared to the cost.

Steve Heilig: During our last call, on the Precautionary Principle, I mentioned a book, "The Precautionary Principle: Late Lessons from Early Warnings," edited by Harremoes et al, which shows results that can be demonstrated. I recently did a review of this book in Whole Earth Magazine.

Fawn Pattison: I'm curious about what's going on with birth defects in the Southeast?

John Harris: A good person to contact would be Larry Edmunds at the CDC, his number is 770-488-7171.

Steve Heilig: Are there analogous programs in other states?

John Harris: I'm not sure how good the data is in different states. Reporting can have a variable quality.

Steve Heilig: John, in California, when you get a call from someone suspecting a cluster what is your protocol?

John Harris: We look at our current data to see if the rate is high. We would interview if there were enough cases.

Betty Mekdeci: Is it based on hospital discharge info?

John Harris: We identify cases through the first year of life. We investigate discharge summary, pathology reports, and admission logs.

Betty Mekdeci: What are the differences between later identified cases and right at birth?

John Harris: We find about half at birth.

Nina Moliver: This is significant material, but we need to be aware that when we refer to these occurrences as mistakes, they are not mistakes. Corporations are doing what they are chartered to do to, which is to make money without restraints.

John Harris: Judith, when we get a cluster we ask if there is clear and present danger. The most logical first step would be to measure TCE and other substances in water.

Judith Cude: Statistics show that a Company here has released a million pounds of toluene into the air. The EPA went in and their environmental people were fired and new people were hired to guarantee that what they were emitting into the atmosphere was at a safe level.

Pete Myers: Were measurements taken of the water?

Judith Cude: The Superintendent of our water plant, admitted that there was .38 parts per billion of TCE in one well, but it was diluted down so much by water and chemicals that they didn't feel it was significant enough to cause harm.

Roy Ozanne: The problems from environmental poisonings are becoming a risk to all. If we play the game of forcing industry to not poison us and we do nothing more, we leave ourselves more victim than necessary. We should be looking at what we can do as individuals to protect ourselves from contamination. The book, "Nutrition and Physical Degeneration" by The Weston A. Price Foundation informs us of just how open we are to birth defects.

Louise Mitchell: Weston Price has a lot of well-documented research on nutrition. The website is www.westonaprice.org.

Steve Heilig: We've had some discussions within CHE about risk reduction; this is something that we will continue to pay attention to.

Phil Lee: This has been an important conversation, and the increasing number of clusters tells us this is an area that we need to continue to discuss.

Pete Myers: For more information and coverage on some of these reports and news stories, visit www.environmentalhealthnews.org.