DES tears

DES Tears Flow Across Each Generation

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DES Info: “The fear is still there and the tears are still flowing” #TheDESTragedy

It’s interesting watching our roles within the family change over time. I saw my mother cry during those long and difficult years when my compromised reproductive system worked so badly. Now, I find myself on an emotional tightrope worrying about the future effects of DES exposure on myself, my son and my granddaughters who are also members of the DES community.

Worrying seems to go with being a DES Daughter. My first real jolt came when excitement at my first pregnancy which turned to sadness upon learning it was an ectopic pregnancy. In the early 1970’s, we didn’t know of the increased ectopic pregnancy risk for DES Daughters, but I always wondered. Years were spent trying to get pregnant again and I underwent additional surgeries trying to help my fertility and chances of becoming pregnant.

The doctors felt that I would never be able to get pregnant. It was not easy but I was granted a “miracle baby” and my son was born after a difficult pregnancy.

We had wanted more children, so we tried again, only to experience the heartache of a second ectopic pregnancy. I hadn’t felt well but doctors couldn’t find a problem so they sent me home. There were no ultrasounds then so we didn’t know how serious things were until the Fallopian tube ruptured and I almost died. I remember waking up on a ventilator, knowing what had happened and crying along with my husband, mother and father.

You can only imagine how my Mom felt then. She was angry and mad at the DES she’d been prescribed. Mom and I both cried long and hard during my recovery as we realized the loss of both ovaries and Fallopian tubes meant I’d reached the end of my fertility at the age of 26. It had been my dream to have another child and it was gone. I think the hardest to overcome was the loss of not being able to have another child and to see my Mom’s grief along with my own.

DES daughter

But I was alive – with a son to raise. Through the years my son has remained healthy, however, I still worry. He is a DES Grandson and we don’t know whether there are problems yet to come. I have to worry for my son because he doesn’t do it himself. He’s a typical guy and tells me not to be concerned. I urge him to pay attention to his body and get the health screenings he needs as a man. I think most mothers worry about their sons, but being a DES Daughter, with a DES Grandson, exacerbates the situation. His life has also been affected by his and his wife’s own pregnancy losses. Any connection to DES? One wonders and my fears are still there.

And then there’s great joy in my life. My son and his wife welcomed two daughters into their family. I melt when they run into my arms and seem so perfect. But in my quiet moments I have been known to cry when I think that they are DES Great Granddaughters and might have also been affected by this drug. It’s just too early to know for sure, so my fears are there.

DES across generations

 

How do I handle this? By staying informed about DES and being an advocate for the DES exposed. We must be educated, aggressive and assertive when dealing with our health care. Don’t be shy, read all you can. If you read the Facebook page DES Info, you will know more than your doctor.

Case in point – after my hysterectomy, I did not feel that I needed any further Pap tests. But I learned from activist Pat Cody, that what holds true for unexposed women does not necessarily apply to DES Daughters. So I do take care of myself and have yearly Pap/pelvic exams and mammograms. All DES Daughters should, whether or not they’ve had a hysterectomy. Of course, I worry about cancer – now even breast cancer – so the fear is still there and the tears are still flowing.

But I am also taking action. I pay attention to DES for myself, my son and my granddaughters. We need more research and information for DES sons and grandsons along with the third generation.

The word needs to get out that DES exposure did affect the fetus’s skeletal structure. Research has proven this. I know it has affected mine because I am dealing with osteoporosis and brittle bones.

In quiet moments I’m sure we’ve all been overwhelmed with emotions. But nothing feels better than rising up and doing something positive. You can get involved by advocating for the DES exposure and to push government agencies to do more.

The DES Tragedy still continues. We now know that it is in the animal industry in Kenya and women are taking DES intended for the cattle. We have also heard that this drug is also being used in China and India.

As a DES daughter, like many of the exposed around the world, we are still awaiting an apology for this tragedy.

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Karen M. Fernandes

AYR Consulting Group
Advocacy for Medical Transitions
President

Karen M. Fernandes, R.N., CPHQ

Karen Fernandes has been a nurse for over forty years and is principal and president of AYR Consulting Group that supports hospitals across the United States in their quest for quality and patient safety along with compliance to Joint Commission Standards and Medicare Regulations. Advocacy for Medical Transitions was just established to serve patients and their families and guide them through the confusing maze of healthcare.

She began her nursing career in New England and has held many positions in nursing from Medical/Surgical, Emergency, OB, Nursing Supervisor, Chief Nursing Officer and Director of Quality Management. Prior to establishing a consulting firm, Karen was with Tenet Health System and the Daughters of Charity National Health System now called Ascension.

Karen served as chairman of Joint Commission’s Professional Technical Advisory Committee for Hospitals 2001-2003 and served as a member of that committee for six years. She has also been a member of Joint Commission's Hospital Advisory Committee and Nursing Advisory Council. She is currently now on the TJC Consultant’s Forum. Additionally, Karen was a member of the Federation of American Hospitals Quality Committee and served as Chairman of the Quality Committee 2000 - 2003. Karen was also a member of the National Quality Forum on the Consumer Council, Provider Council and Quality Council.

Karen presents seminars on Joint Commission survey preparation, readiness/compliance to Joint Commission standards and CMS Conditions of Participation compliance. AYR Consulting Group conducts mock surveys and provides for continued survey readiness for hospitals. Karen speaks at hospital conferences, Medical Staff and Governing Board meetings on attaining Joint Commission standard requirements and maintaining compliance to CMS Conditions of Participation.

Advocacy for Medical Transitions was just established as a subsidiary of AYR Consulting Group. Karen is a patient advocate and nurse who is uniquely qualified to provide professional services tailored to specific healthcare concerns. This service will help guide patients and/or their families through the various transitions they may face during a hospitalization, planning for care, discharge to other levels of care or concerns in care.

As a volunteer, is an advocate for the DES exposed for over 30 years. Karen served as President of DES Action/USA and as a board member for many years. This was a non-profit organization whose goal is education, advocacy and support of the millions of Americans exposed to the drug Diethylstilbestrol in utero.

Currently, Karen is the lead administrator for DES Info. This group provides ongoing information on DES exposure and other health related information for the DES Exposed.

Karen has participated in NIH research studies on DES. She also authored a DES Exposure Nursing Curriculum which is available in the United States, Canada and Europe.

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