DES pregnancy Archives - Hormones Matter

When Being a Tall Girl Was a Medical Condition: DES and the Tall Girls

Published on July 26, 2022

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To treat young healthy prepubescent girls with a known carcinogen to stunt their adult height sounds like a bizarre science fiction experiment, but it is unfortunately true. From 1959 through the 1970s physicians and researchers from the Royal Children’s Hospital and the University of Melbourne, gave adolescent girls of tall stature a powerful estrogenic hormone with a growing list of known side effects called diethylstilbestrol (stilboestrol) or DES.

DES had been used in obstetrics to prevent miscarriage, in farm animals to bulk up livestock before slaughter, and to caponize (castrate) chickens from the 1940s through 1970s. Early on, the drug was found to be ineffective in preventing miscarriage and serious side effects including cancer were noted. Indeed, cancer in farm hands caring for animals treated with DES and concern about the effect DES-infused meat might have on human health caused the FDA to ban its use in poultry farming in 1958, well before banning its use in human women. Despite the risks associated with this drug, clinicians and researchers in Victoria Australia, funded by governmental agencies and throughout the US, Norway, and elsewhere, thought stunting the growth of tall girls, for purely psychosocial reasons, was a good idea.

The rationale behind treating tall girls was so they could do ballet, buy clothes more easily, and find boyfriends and husbands. DES was used on healthy girls for purely psychosocial reasons. Apparently, being a tall girl was reason enough to consider medical treatment with a powerful, largely untested, synthetic estrogen with mounting evidence of carcinogenicity.

Little consideration was given to the psychosocial effects this drug would have on a young girl including nausea, the immediate onset of menstruation, the sudden development of breasts, and sudden rapid weight gain; and, of course, the long-term health outcomes of this treatment were never a consideration. The only long-term outcome considered was adult height. When meeting the tall women who underwent this treatment, it is reasonable to conclude the treatment did not work. Indeed, most of the research suggests only a 4cm reduction in height.

Discovering the Tall Girls: DES Action Australia

DES Action Australia was established in 1979 as the national support and advocacy group for individuals exposed to DES. In the early 1980s, the DES issue was new to us all and we were devouring information about its history and use. One aspect of interest was its use in veterinary practice. One of the first DES “patients” may have been Tricky Woo of the ‘All Creatures Great and Small’ books and TV series. In the late 1930s, kindly Dr. Herriot prescribed the new “wonder drug” stilboestrol for Tricky Woo’s embarrassing problem with incontinence.

Any drug which was thought to prevent miscarriage and result in bigger, healthier babies was of obvious interest to veterinary science. However, as in the earlier laboratory animal experiments, DES was soon shown to be deleterious to the health of the mother animal, to the DES-exposed offspring, and, interestingly, to subsequent litters. Thus, recommended use of DES in veterinary practice was limited to old animals and animals that were never going to breed.

We first heard of DES being used to inhibit the adult height of tall young girls almost by accident. In the early 1980s a sister of DES Action member, Clare Green, was studying veterinary science at Melbourne University. Through her, we learnt of a Melbourne veterinary scientist, Dr. Anne Jabarah, who had researched DES during the 1960s as part of her Master’s and PhD studies. Clare rang Dr. Jabarah and spoke to her at length about her research findings: that administering DES to cattle led to them subsequently developing mammary cancer. Dr. Jabarah commented that the published articles caused a great deal of interest internationally but not in Australia. Almost as an afterthought, she mentioned the Royal Children’s Hospital (RCH) here in Melbourne had requested details of her research, as they were thinking of using DES to inhibit the growth of young girls. She said she had often wondered whether they went ahead with the treatment.

Clare, on behalf of DES Action, wrote to the RCH seeking clarification on the matter. A letter was received from the medical director of the RCH stating that DES had never been used for such a purpose. In addition, Clare was asked to go into the Victorian Health Department to meet with a department spokesperson. The doctor told Clare that the matter had been looked into and there was no evidence that DES was used for this purpose. We were thus reassured, both in writing and in person, that no such trial had taken place.

So it came quite a shock several years later when I was contacted by a young woman who had been part of this nonexistent trial. She had attended the RCH and had been given DES to stunt her growth. She was in her early 20s and had been diagnosed with advanced invasive cervical cancer. As she was a nurse she knew this was very rare, particularly as she had none of the known risk factors for the disease.

When I asked her how she found out about DES Action and obtained my phone number, she said her treating doctor (a well-known Ob/Gyn) had suggested she ring. He had made the connection between her DES exposure as a young girl and the subsequent cervical cancer.

Another letter was sent to the RCH, again requesting clarification on the matter. We received back a very defensive letter in which the hospital distanced itself from the trials. They said that the clinician involved had been a private consultant and what he did in his clinics was in no way connected to the RCH.

Untangling the Tall Girls Trials after Years of Secrecy and Denials

In subsequent years (the mid-1980s to 1997) we received a handful of further inquiries from “tall girls” requesting information. Unfortunately, these were spaced too far apart for us to put the women in contact with each other. The health concerns of these women had an all-too-familiar ring: dysplasia, endometriosis, ovarian cysts, aggressive cancers (cervix and breast), impaired fertility, and premature menopause (i.e. occurring during their 20s).

I can’t really describe my feeling when I opened The Age newspaper on 27 June 1997 and read on page 1: Hormone tests on teenage girls referred to inquiry. I think the main emotion was a sense of relief – that the truth would finally be known – tall girls were given DES to stunt their growth. It also brought back to me the anger and frustration Clare and I experienced in the early 1980s when our inquiries were fobbed off by the medical establishment and health authorities.

And then my phone started ringing. As DES was mentioned in the article, the newspaper must have had me as a contact and referred any inquiries to me. Remembering how previously we were unable to put the women in contact with each other, I made a contact list of every phone call received. I explained to every caller the importance of organizing, of forming a group to share experiences, and offered to give them the list to follow up. From memory, I think Janet Cregan-Wood was about the fifth caller. She rang back the next day and “volunteered” to take on the role. And so the Tall Girls group formed and their DES story emerged.

More about DES and Tall Girls Story

Normal at Any Cost: Tall Girls Short Boys, and the Medical Industry’s Quest to Manipulate Height
Participation, Empowerment, and Effectiveness: The Tall Girls Inc. Experience.
Tall Girls, Inc. Australia
DES and the Meat Industry: My Year of Meats, by Ruth Ozeki

About the author: Marian Vickers is a DES daughter and, in 1979, was a founding member of DES Action Australia. As the DES story has evolved over the years so her focus has broadened – from issues around DES exposure to the wider issue of safety of pharmaceuticals; and finally to an understanding of endocrine disruptors and the implications for public health, particularly in terms of inadequate drug safety surveillance and reporting systems. In 2008 Marian became a ‘Gardasil mother’ when her elder daughter’s health was severely impacted by the HPV vaccine. Not only did she gain an appreciation of what DES mothers went through, she sees disturbing parallels between the DES and Gardasil stories.

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This article was published originally on Hormones Matter on April 21, 2014.

Surviving Inborn Errors of Metabolism with Diet: Multiple Acyl CoA Dehydrogenase Deficiency

by Gwen Abele

Published on August 29, 2018

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Multiple Acyl CoA Dehydrogenase Deficiency Nutrition

For DES Daughters, Conception and Pregnancy Are Difficult

My first pregnancy, now 30 years back, was difficult. I am a DES daughter and after years of trying to conceive naturally, we tried in-vitro fertilization (IVF), which was pretty new at the time. The first IVF attempt led to a miscarriage. The second IVF attempt was successful and I gave birth to triplets. The pregnancy was difficult. I was on bed rest throughout the pregnancy and in hospital from week 26 through 30 when the babies were born prematurely. Although they were preemies and had to stay in the NICU for five weeks before coming home, they had few problems once they were home. They were all good nursers after they developed the sucking reflex at about thirty two weeks of age – two weeks after delivery. I nursed all three of them for the first six months and when they went onto solids they were great eaters.

A Miracle Baby but Something Was Wrong

Fast forward eight years, I became pregnant naturally. Something I NEVER in the world expected. This baby was such a miracle. To my surprise, the pregnancy was normal. I delivered what appeared to be a healthy baby boy via c-section. Early on, however, it became obvious that something was wrong.

My son, Austen had no interest in breast feeding and although the nurses said it was not an uncommon thing for a baby not to eat for the first few days. I remember being very concerned about his crying. Since, I had c-section, I stayed on at the hospital to get back on my feet. Austen wailed like only a hungry baby could. When he was taken from my room so I could get some rest, I could hear his cries in the little nursery down the hall, louder than all the others. The second day was like the first. Now I was worried. The staff seemed indifferent. He still wouldn’t eat and he was clearly unhappy.

That evening lying next to my bed in his little bassinet, his wailing forced me to get out of my bed to pick him up. The nurses were all busy and because it was a Friday there were a lot of visitors, noise, and rejoicing the birth of all the new babies.

Once I got Austen settled in my arms and I was comfortable, I tried once again to nurse him. Nothing. His crying turned to a sound that a little kitten would make. The light was low and I held him and tried to soothe my sweet little man. I don’t know if I fell asleep or we both became one again and my breaths were his and finally he was at peace. Suddenly my dream turned into a nightmare. I stroked his head and it was cold. I called his name and he didn’t move. I screamed at the top of my lungs for help and my baby didn’t flinch. I recall screaming forever until the room was full of people and lights and the hallway was silent. Austen was a strange blue color. They took him away and I knew he was dead and I still kept screaming.

My writer’s block is kicking in. This is where I always stop the scene running in my head. I can’t keep writing because I feel sick and clammy and the tears make it hard to see. I need to finish this story because maybe it could have a happy ending.

Austen was eventually revived. The nurses said he was without oxygen for twenty minutes. I think it was longer because no one came to my room to tell me anything and I was very hoarse from wailing. He was transported by ambulance to New England Medical Center, (also known at the time as The Floating Hospital for historical Boston reasons), where he was stabilized from the seizures and put under oxygen. Once again I had a baby hooked up to wires and tubes, but there was no excitement this time. He had suffered serious brain damage and on the third day of his stay in the NICU. I was asked to sit down with the doctors who had been following him.

The Diagnosis: Multiple Acyl CoA Dehydrogenase Deficiency (MADD)

Dr. A, the metabolic doctor who had been spending a lot of time with him, told me that he had a serious genetic defect. She called it Glutaric Acidemia type II or otherwise known as Multiple Acyl CoA Dehydrogenase Deficiency (MADD). She told me that it was a fatal disease and explained that he could not metabolize fats or proteins. She said that no other child born with this disease had lived for longer than six to eight months. She was patient with me when I cried. She said that she wanted to send a muscle fibroblast to a doctor in Iowa who would confirm the disease. She said that he could be brought home once he was taken off the tube feeding him through his nose and suck on his own. He should be given the best life possible in the next few months. It was “best not to resuscitate” should he stop breathing again, because of all the damage that he had already sustained. He was not to drink breast milk, too much fat and protein, so he needed a special formula.

The Power of a Mom Fighting for Her Child

Up to this point, I was in shock and depressed and felt very alone and defeated. But as I spent days with him watching as he came out of his long sleep and when he finally looked up at me and took formula from a bottle, something changed in my attitude. On the day we were told we could go home I became an angry, assertive woman, a person I had never been in my whole life. I demanded an apnea monitor to have at home in case he stopped breathing. I insisted that I would breastfeed him and I didn’t want the formula. After all if he was to be given the best life in six quick months, shouldn’t he be allowed to breastfeed?

He went home and I pumped and he learned how to nurse. I got in touch with the FOO (Fatty Oxidation Disorder) Family Support Group and the Organic Acidemia Support group and got a home computer. Austen grew. He gained weight and I became more determined not to let the diagnosis defeat us. We got the confirmation from the fibroblast that he had “2% of controls… as low as enzymes get.” It was a mitochondrial disease and there was no cure except to continue with the carnitine and B2 supplements that were supposed to sustain him.

I read Dr. Andrew Weil’s book, “Spontaneous Healing” and was particularly affected by the chapter that addressed malfunctions in DNA. He says that it can be reversed through diet especially by ingesting natural enzymes. I changed my diet radically after going to see a naturopathic doctor who put me on a meat-free, dairy-free diet which included mostly raw fruits and vegetables and whole grains, (both Austen and myself still follow this diet). I didn’t stop there, I sought out a Native American shaman, a Catholic priest who was a faith healer, a chiropractor… and a second opinion from another metabolic doctor.

A New Doctor and New Hope

From the first time I met Dr.K , I knew that we would be in good hands. He believed in treating Austen the individual, not the disease. His approach was much more hopeful and that is what I needed to keep going, especially since I was a single parent at this point. He marveled at his weight gain and cognitive abilities. He was delayed but he seemed to be progressing. The one concern was that his head circumference had come to a halt. Dr. K prescribed CoQ10 and in the next few months after starting it, his little head started growing again. Although he is still considered to be microcephalic.

When we started with solid foods each meal was traumatic, because he would throw it up from reflux. I had to clean up the mess and start all over again. I knew if he didn’t eat we would end up in the ER. He came to recognize that he had no choice in this food business, he had to keep it down!

I weaned him very gradually off of the barbiturates that he had to take for seizures and he has never had another one since. Ear1y on I recognized that Austen had a severe visual impairment and hooking up with Perkins School for the Blind got us involved with the infant toddler program, preschool, the ‘Lower School’ and last June he graduated to the ‘Secondary Program’. Social skills, PT, OT, sensory integration, mobility, music therapy, gym, arts, swimming and of course academics are only part of the total program. We had a skilled health care clinic on the grounds and were very lucky to live so close to the school and be part of this wonderful community.

Surviving Genetic Errors of Metabolism Through Diet

Today, at almost 22 years old, he is of normal height and weight, a handsome devil who is devoted to his older siblings, Nathan, Sasha and Taylor, and his loving stepfather, Joe. It has not been an easy road. We have had many bumps and starts. He stopped sleeping, (night and day) at about age three. Several trips to the ER after a vomiting bouts, severe sinusitis and airborne allergies, incontinence still to this day, but we persisted.

He has many food allergies which have been hard to decipher since he can’t really tell us ‘where it hurts’ and displays his discomfort through tantrums or negative behavior. Although once we got the nuts, legumes and lentils, etc., out of his diet, we have seen much less confusion and better spirits. The change in diet and recognizing that his behavior was on the autistic spectrum, (and getting the diagnosis of Asperger’s syndrome), has afforded me with much more knowledge of how to help my son deal with this world that he doesn’t really understand, and help others to understand his world. He is about to graduate from the Guild School for Human Behaviors where he has learned so much about how to express himself and keep his meltdowns to a minimum.

I feel strongly that the choices I have made for my son have been the right ones, but I could not have done it without the help of all the wonderful people I have met along the way, who now share a part of Austen’s world. Without them, I might not have made some of the connections that have made such a big difference in the quality of my son’s life. I cannot stress enough how important diet has been. The physicians in the NICU suggested that he would not live beyond 6 months and that we should not resuscitate should he stop breathing. I ignored them and with diet and persistence, he has lived and we have loved him for 22 years.