A woman ahead of her time

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She has been told by health professionals that she is 50 years ahead of most scientists in terms of researching the possible environmental effects on birth defects.
Currently living in Sunrise Assisted Living in Lynbrook, Riva, 97, is the last surviving member of the original executive board of AHRC, a not-for-profit organization that supports and advocates for children and adults with intellectual and other developmental disabilities. For nearly 60 years, Riva has spent most of her time trying to discover the reasons that all three of her children were born with mental retardation.
It-s claimed that 60 percent of birth defects go unexplained, Riva said. I can only wonder whether this figure includes those defects that go undetected at birth, like cancer, heart defects, non-Downs mental retardation, and those mysterious maladies which few have ever seen before.
Riva has spent her life trying to get scientists to explore the possibility that paternal lead exposure and other toxins can lead to birth defects, mental retardation among them. Last year, she published her own personal account in AHRC-s newsletter, which won her a state award from the organization.
Riva-s children are now senior citizens themselves. Lorraine, 73, Carol, 71, and Frank, 68, all work at a vocational workshop in Freeport, and live in AHRC homes the sisters in Valley Stream, and Frank in Baldwin. They are all happy, employed and in good health.
To follow is mostly Riva-s own account of what turned out to be her life-s mission to uncover the reason for her children-s disabilities, and to help prevent what could be years of heartache for others.
There-s something wrong with my babies
In 1935, our daughter Lorraine was born, Rive wrote in her paper. My uncle had us consult a pediatrician friend who recognized a problem. He sent us to Columbia Presbyterian Hospital. Following lengthy testing, a staff conference could not reach a diagnosis, but suggested that pituitary injections might be indicated. These were continued for several years with no apparent success.
In the meantime, we took our children to see Dr. Winthrop Phelps at Johns Hopkins. Dr. Phelps had been a pioneer in cerebral palsy. However, he did not see any evidence of it in our children, nor did he have any idea what was wrong with them. We also consulted Dr. Alexander Wiener, who discovered the Rh factor. He did a full blood work up for our entire family, with negative results.
Riva-s son, Frank, was born in 1940, with similar symptoms to those of his sister. After more tests, one doctor told the Riva-s that the best thing to do would be to institutionalize their children, as they were too young to bear such a burden and were entitled to a better life. Another doctor told us to stop wasting our money and to use it instead for our children-s enjoyment, Riva said.
After World War II, Riva-s physician asked her if her husband had been exposed to lead. Frank, Sr. worked as a plumber, she told him, working with lead joints in closed quarters. In addition, said Riva, he moonlighted for friends, performing jobs that frequently involved exposure to lead. The doctor admitted that he did not know any connection, except that lead was toxic and he wondered if it could affect our children. I began to spend my days in medical libraries, and read all that I could on lead poisoning and its effects, she said. Also, I wrote to the Journal of Heredity. They were so impressed that they printed excerpts from my correspondence, Blastophoric Lead Poisoning? in September 1948, hoping to stir interest in the subject they felt was ignored for too long.
In that article, Riva described that, for months before their marriage, her husband worked in new housing developments as a plumber-s apprentice. Each day, he unrolled lengths of lead pipe (standard at that time), cut and set it in place for installation. Lacking washing facilities, he ate his brown-bagged lunch with lead-blackened hands.
In the same year that our daughter Carol was born, in 1937, Frank developed a severe stomach ailment which the doctor thought was an ulcer. The doctor said he made the diagnosis on the basis of an X-ray. Since then, I have come to know that his symptoms nausea, stomach pain, and grayish complexion are symptoms of lead colic. Frank-s doctor placed him on bed rest and a milk and cream diet, and he recovered in two weeks, Riva said. I have since come to learn that milk diets are ineffective in treating ulcers. However, for many years they have been used effectively to treat lead colic.

A mother-s diagnosis
I couldn-t understand how our three children were mentally retarded, yet even today, several generations later, there has never been any such history in either of our unusually large extended families, Riva said. I was taught in school that the germ cells were inviolable, so I wondered how lead could be involved. I speculated that if the father-s body was chronically saturated with a toxin such as lead, it should disperse throughout his entire body, including semen and sperm, which in time might poison an embryo at the very moment of conception.
I was truly impressed when I compared the effects of lead poisoning with my children-s defects: in lead paint poisoning, speech defects are early indications, and our children all have severe speech difficulties. Lead poisoning also causes paralysis of exterior muscles, and at birth, all of our children had several flexed fingers that couldn-t be stretched. Frankie also had clubbed feet.
Through my affiliation with AHRC, I was introduced to Dr. Krystina Wisniewski of the Institute of Basic Research in Staten Island. In the beginning, she doubted my theory, but after approximately three years of testing our whole family, she concluded I was probably right although my theory could not be proven.
Through her years of medical reading, Riva found a bibliography listing from 1915: Blastophtoric Effect of Chronic Lead Poisoning by Carl Weller, AB, MD, Department of Pathology, University of Michigan School of Medicine (J. Med Res 33-271, 1915). At the time, I couldn-t locate a copy, but my librarian recently secured one from the University of Rochester, she said. It reported how lead exposed patients had problems of infertility, miscarriage, and stillbirths. I wondered about the children who had survived. If their damage was not apparent at birth, their condition was probably not associated with lead. It also explained why, when the children were tested for lead, that none was detected.
The article also reported on many animal tests where leaded and unleaded parents were mated and then switched. Each time, the offspring of lead-tainted parents reported damage, while none of the offspring of untainted parents were reported damage.
Dr. Devra Lee Davis, a former advisor for the department of Health and Human Resources and now with the World Resources Institution in Washington DC is very concerned with environmental problems and is convinced of their connection with breast cancer and birth defects.
She told me she thought I was 50 years ahead of the scientists, Riva said. She suggested that I write Dr. Herbert Needlemen of the University of Pittsburgh-s Lead Research division. He replied that there was little work on the effects of male exposure to lead, but that was has been done is quite suggestive.
If Dr. Weller-s article written in 1915 had received better attention, perhaps our children could have been normal. Perhaps today the poison could be removed from the father. Although my children cannot currently benefit from this information, I have decided that our experience might help prevent future parents and their babies from similar tragedies.
I believe it is time for scientists to examine the effects of the father-s preconception exposure to toxins. I don-t understand why all the animal studies with lead continue to be ignored, while animal testing seems acceptable for researching cancers, drugs, and even cosmetics.
When her husband, Frank died a few years ago, Riva had a piece of his bone and a tooth analyzed. They had high lead content, she said.
I hope my experience will help future generations of parents produce children with normal childhoods and families who have to endure the unnecessary burden that I did, and the lifetime of heartache.
Meanwhile, Riva-s children visit her often in Lynbrook, talking over each other for her attention. They are cheerful and animated, and love to talk about their jobs and their daily activities. They love to bowl and shop for clothes. But i still worry about them, said Riva, as the girls leaned their heads on their mother-s shoulders.
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