Ripe Time to Connect FASD Pieces

Red Shoes Rock honors the FASD pioneers –
Dr. Paul Lemoine, Dr. Christy Ulleland, Dr. David Smith – Thank you!

For over 100 years physicians had known that alcohol crossed the placenta.

And many believed children of problem drinkers had defects related to poor genetic stock rather than to alcohol exposure. Historically, there were seasons of questions. The unconnected pieces of fetal alcohol spectrum disorders (FASD) had existed since the dawn of alcohol abuse. And the puzzle pieces of understanding lay strewn inside closet, behind doors, on shelves and in laboratories.

Over 80 years ago, March of Dimes was founded

March of Dimes led the fight for the health of all moms and babies in the USA. What started in the USA with President Franklin D. Roosevelt’s struggle with polio led to the creation of the National Foundation for Infantile Paralysis, better known as March of Dimes. A cure was found for Polio, and with that success, March of Dimes focused on fighting birth defects, premature birth and infant death. They initiated newborn screenings. They educated medical professionals and the public regarding best practices.

Over 70 years ago, genetics remained the conclusion in a 1946 article in The Journal of the American Medical Association.¹

In the 1950’s, French researchers began to study alcohol and pregnancy. In fact, an unpublished thesis reported the prenatal effects of alcohol on children born to parents with alcohol use disorder (AUD), then merely referred to as alcoholic parents. Today, problem drinking that becomes severe is given the medical diagnosis in the USA of “alcohol use disorder (AUD).” AUD is a chronic relapsing brain disease characterized by compulsive alcohol use, loss of control over alcohol intake, and a negative emotional state when not using.

March of Dimes believes every baby deserves the best possible start.
Sadly, not all babies get one a start without prenatal developmental trauma. 

March of Dimes changed the public awareness of birth defects in the United States. The visible effects (limb defects, congenital heart disease, malformations of the inner and outer ear, and ocular abnormalities) of the drug Thalidomide, (the late 1950s to early 1960s) used for the treatment of nausea in pregnant women was readily visible. 

A more stealth prescription, diethylstilbestrol, known as DES was developed in 1938, it was for short-term use for menopause symptoms. It was not developed to give to pregnant women, which wasn’t done for several more years when it was given to pregnant women to prevent miscarriage. (See Timeline)

Clinical studies showed DES was ineffective for this purpose in the 1950’s, but the drug was continued to be prescribed. Then in the late 1960s, a rare cancer of the vagina among young women, called clear cell adenocarcinoma (CCA) began occurring. This type of cancer was linked to their exposure to DES while in the womb. In 1971, the U.S. Food and Drug Administration notified physicians that DES should not be prescribed to pregnant women. By that time, already between 5 million and 10 million pregnant women and babies had been exposed to the drug. (Read more)

In a significant study of 6,500 women (4,600 exposed and 1,900 unexposed), the researchers found that the daughters with exposure to DES while in the womb had an increased risk of 12 medical conditions, including a twofold higher risk of infertility and a fivefold increased risk of having a preterm delivery. ¹

Those two highly published issues increased public awareness. In addition, women who had been exposed to DES were now at child bearing ages and unable to conceive. Many of these women adopted children with special needs. And many of these children had undiagnosed FASD.

Perhaps the time had come for people to accept the possibility alcohol also may cause issues?

 

Meanwhile, in 1968, Dr. Paul Lemoine, a rural French pediatrician (1917-2006) published a study of 127 children from 69 French families.²

Twenty-five children had distinct features related to prenatal alcohol exposure. Dr. Lemoine called this alcoholic embryopathy. Sadly, his findings were overlooked, that is until Jones and Smith contacted him, before publishing their Lancet paper. It was several years before they cited him. Was Lemoine bitter? He was an honorable man. He was grateful, the time and place was ripe and his worked had been ignored. 

“Fortunately in 1973, Smith in Seattle, after reading the abstract of my work in the French Pediatric Archives, published 8 cases with the same conclusions. He wrote to me asking for my complete text. This is an amusing fact: the 127 cases of a modest pediatrician from Brittany did not create any interest, whereas 8 American cases became immediately convincing and the syndrome became rapidly known in France and in the world. Thanks go to Smith for being able to impose the existence of this reality and its dramatic consequences”. —Dr. Paul Lemoine

Meanwhile in 1968, another obscure pediatric resident, Christy Ulleland, in Seattle, noticed a pattern.

Dr. Christy Ulleland was interested in failure-to-thrive babies and noted that many of these babies were birthed to mothers with AUD. Curious, she reviewed delivery records and discovered more babies matched the pattern she was seeing. She brought her findings to her colleagues, Drs. David Smith and Kenneth Lyons Jones.

Christy Ulleland writes about this discovery (read full text)

Christy Ulleland
Harborview Medical Center

From October 1968 through June 1969 we observed six infants at the University of Washington’s Harborview Medical Center who had three features in common. First, Each of these infants was born undergrown for gestational age, with a birth weight below the tenth percentile, by Lubchenco’s standards. Second, their postnatal growth and development did not proceed at a normal rate. Four were admitted to the hospital in the first six months of life because of failure to thrive and did not grow there in spite of special attention given to their feeding and care. Finally, the mothers of all these infants were chronic alcoholics as defined by Keller’s. modification of the World Health Organization definition. Alcoholism is defined as a chronic behavioral disorder manifested by repeated drinking of alcoholic beverages in excess of the dietary and social uses of the community and to an extent that interferes with the drinker’s health or his social or economic function.

The observation of this triad led us to examine our experience with infants undergrown for gestational age, infants under one year of age who had been admitted to the hospital for failure to thrive, and alcoholic women who had delivered at our institution. The newborn nursery and delivery records were reviewed to identify all undergrown infants born in the 18-month period January 1, 1968, through June 30, 1969. This period included the birthdates of the six index cases. The records of infants less than one year of age hospitalized with a diagnosis of failure to thrive in the same 18-month period were also reviewed.

Obstetricians and paramedical personnel in the prenatal clinics were asked to assist in identifying mothers who were alcoholics. These personnel included social workers, public health nurses, and nutritionists who were intimately involved in the pre- and postpartum care of these patients. We asked them to identify known alcoholics who had delivered in the specified 18-month period and any women who were intoxicated when seen in the morning prenatal clinics or during morning home visits by the Public Health Nurse. (Read full report)

For further Historic reading read ABSTRACT PUBLISHED:
01 September 1970  “The Offspring of Alcoholic Mothers”

• Christy Ulleland
• Richard P Wennberg
• Robert P Igo
• Nathan J Smith

And with a public already aware of birth defects, the USA was ready to listen.

In 1972, Dr. Kenneth Lyons Jones begin a 2-year fellowship in Dysmorphology at the University of Washington, under the mentorship of Dr. David W. Smith. In 1973, Jones and Smith identified a specific pattern of malformations, growth deficiencies and central nervous system defects in 10 children of alcoholic mothers. They published their findings and labelled the condition fetal alcohol syndrome (FAS).⁴ Similar findings were found in Germany, France and Sweden.^5-7

View Dr. Kenneth Jones video on History of FASD

And the hidden continued…. “In the 1970’s alcohol was used to stop preterm labor. It was no more effective than a placebo and bed rest. I know these children and having now raised six children with FASDs, there is not denying this affected my friends,” says Ann Yurcek. (Read More)

For more information:

1. Hoover RN, Hyer M, Pfeiffer RM, Adam E, Bond B, Cheville AL, Colton T, Hartge P, Hatch EE, Herbst AL, Karlan BY, Kaufman R, Noller KL, Palmer JR, Robboy SJ, Saal RC, Strohsnitter W, Titus-Ernstoff L, Troisi R. Adverse Health Outcomes in Women Exposed In Utero to Diethylstibestrol. NEJM. Oct. 6, 2011. 
2. Queries and Minor Notes: Effects of Alcoholism at the Time of Conception. Oct 19, 1946, Vol. 132:419. The Journal of the American Medical Association.
3. Lemoine, P.; Harousseau, H.; Borteyru, J.-P.; et al. 1968. Les enfants de parents alcooliques: Anomalies observees. A propos de 127 cas [Children of alcoholic parents: Abnormalities observed in 127 cases]. Ouest Medical 21:476-482.
4. Jones, K.L., and Smith, D.W. 1973. Recognition of the fetal alcohol syndrome in early infancy. Lancet 2:999-1001.
5. Majewski, F.; Bierich, J.R.; Loser, H.; et al. 1976. Clinical aspects of pathogenesis of alcohol embryopathy (author’s translation). Munch Med Wochenschr 118(50):1635-1642. [Article in German]
6. Dehaene, P.; Samaille-Villette, C.; Crepin, G.; et al. 1977. Le syndrome d’alcoolisme foetal dans le Nord de la France. La Revue de l’Alcoolisme 23:145-158.
7. Olegard, R.; Sabel, K.G.; Aronsson, M.; et al. 1979. Effects on the child of alcohol abuse during pregnancy. Retrospective and prospective studies. Acta Paediatr Scand Suppl 275:112-121.

Our team also discovered this artcle the day after we posted this blog. It is excellent on the History of FASD. Thank you. 

From Canada
Clarke, M. E., & Gibbard, W. B. (2003). Overview of Fetal Alcohol Spectrum Disorders for Mental Health Professionals. The Canadian Child and Adolescent Psychiatry Review, 12(3), 57–63.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2582751/

From New Zealand
Salmon J (2016) Diagnosing Fetal Alcohol Spectrum Disorder: Historical to Present Day Challenges. JSM Schizophr 1(1): 1004. Jenny Salmon, Centre for Research on Children & Families – Research Cluster, University of Otago, New Zealand,

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