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CAH Personal Story 

Alison Winters is 23-years-old, resides in the Bay Area, and was diagnosed with CAH at birth.  She agreed to share the story of her family’s CAH experience with CARES Foundation members.

My older sister, Leigh-Anne, was born in 1981 and diagnosed with CAH at birth.  Neither of my parents had a family history of CAH and neither were aware that they were carriers of the disease, or even that CAH existed, until Leigh received her diagnosis.

 My parents thoroughly researched CAH and developed a strong relationship with pediatric endocrinologist, Dr. Debra Cohen.  My mother became pregnant with me shortly after giving birth to Leigh and an amniocentesis was performed to determine if I too was affected with CAH.  Test results indicated that I did not have CAH, so my mother did not pursue prenatal dexamethasone treatment.  At birth it was evident that I was affected by CAH, and I began treatment.

In 1986, my mother became pregnant with Tate and decided not to have an amniocentesis.  Tate was also diagnosed at birth with CAH.  For Leigh, Tate and me, because our parents made treating CAH a regular part of our routine, we simply did not think about it much.  As kids we never felt different from other children or had difficulties coping with our CAH.  

My parents never questioned whether or not we would eventually have corrective surgery, but did question the appropriate age for our surgeries to be performed.  They started researching surgeons early on, gathering information in part to be ready for a potential conflict with our insurance company. By the time we were prepared to have surgery, Leigh was 8 and I was 7.  My parents interviewed surgeons within the Kaiser network (all of whom would be covered easily through insurance) but could not find anyone who had performed this type of surgery.  As part of this process, my parents took both Leigh and me to Stanford Medical Center to meet with Dr. Linda Shortliffe.  Dr. Shortliffe was very kind to us and explained in age-appropriate terms what would happen during the surgery and what we could expect afterward.  We felt scared but, with the support of Dr. Shortliffe and Dr. Cohen, also believed everything would be okay. 

We stayed in the hospital for four days following surgery.  Dr. Shortliffe respected our wishes in that she did not allow throngs of medical students and residents to inspect us. When it came time for her to examine us, she always asked permission if there was going to be anyone else in the room, particularly if the individual was male.  She was respectful of our privacy—one reason I believe that our hospital stay was not as traumatic as it otherwise might have been.             

Following our hospital stay we spent two weeks recovering at home.  The recovery was difficult and painful, and there were times when we cried due to discomfort.  We were both extremely frustrated at being propped up all day on an inflatable “donut”.   Still, we  had fun playing and having visitors.

While the entire surgery experience was difficult for my sister and me, it was even more traumatic for my parents. When we first discussed the possibility of Tate having surgery, Leigh and I expressed that it should be performed before Tate was old enough to fully remember the experience, and Tate had surgery when she was 3.

Unfortunately, CAH wasn’t the only adversity our family faced.  Once Leigh turned eleven, she began to experience debilitating migraine headaches.  We were all frightened at the extraordinary intensity of these migraines, but assumed they were related to the onset of puberty and would likely pass.  Yet the headaches did not go away:  not in weeks, not in months, nor in years. 

Leigh frequently missed school and had to make emergency trips to the hospital.  She was checked for brain tumors and eye problems among other potential ailments.  All test results were inconclusive.  Her 17OHP levels were within normal range and the source of the migraines remained a mystery.   Leigh was put on a variety of medications to treat the migraines, but none were wholly effective, and several caused significant side effects.

Leigh’s struggles caused a great deal of fear within our family. Influenced by stress and anxiety about Leigh’s condition, with perhaps some fear that our CAH might cause the same condition for us, Tate and I began to feel upset and to act out.  I took my medication only sporadically (when I would begin to feel sick or had to take a blood test) and also began to experience difficulty in my family relationships. Tate and Leigh, were more withdrawn and became depressed and anxious.  Tate also developed an anxiety disorder. At this time we started family counseling to develop strategies to repair relationships, to support Leigh, and to get through this difficult time intact.  Leigh, Tate and I also had individual counseling sessions that helped us at the time.    

Leigh’s migraines would come and go, usually averaging two per week, but there was never a period of time when she went longer than 3 months without a migraine.  This was difficult for us all.  At times we simply felt helpless. 

Leigh’s migraines worsened in high school, but by that time we had gotten far better at dealing with them as a family.  Leigh and I were involved in sports, had many friends, and were good students.  Tate was also doing well.

Leigh was accepted to the University of California, San Diego and began coursework as a political science major in the fall of 1999.  Even though she was in and out of the emergency room that year, she was on track to graduate from college early and with honors.  Leigh was active with Intervarsity Christian Fellowship—her faith was an important influence on her life—and with Intervarsity she developed an outreach project for international students and taught a Sunday school class for inner-city youth on weekends.  Leigh also completed a semester abroad at the London School of Economics and traveled throughout London and Paris in 2001.    

On February 5, 2002, Leigh was admitted to the UCSD Medical Center because she had been suffering from a migraine and vomiting for 24 hours.  My father drove down to be with Leigh and stayed with her in the hospital.  On several occasions during this hospital stay, my father asked the attending physician and nurse if Leigh had been given the solumedrol she needed. “Yes,” they answered.

But they had not given Leigh any solumedrol.  Leigh died shortly after midnight on February 6, 2002 of adrenal crisis.   The hospital charts indicated that even though the physician and nurse said that Leigh had been given solumedrol, the medication was not administered.  Even though Leigh had a standing order for solumedrol and was wearing a medical alert bracelet, even though the physician had emergency phone numbers for Leigh’s endocrinologists, and even though both Leigh and my father had explained the nature of CAH to the physician, and, finally, even though our father double-checked to ensure that she was given the medication, she did not receive the dose of solumedrol which, we firmly believe, would have saved her life. My parents contacted medical experts who agreed and ultimately filed a wrongful death lawsuit. The lawsuit was settled and the UC Regents acknowledged responsibility.

We were shocked to learn how little the hospital staff knew about treating adrenal patients. Leigh’s treating physician at the hospital made a statement after Leigh’s death that her adrenal condition had nothing to do with her death. He believed that the fact she had gone 56 hours in status migraine without steroids was irrelevant and she had undoubtedly gone that long without medication during previous hospitalizations. He never accepted any responsibility for his negligence.  Other physicians and representatives of the hospital did admit the errors and negligence.

Leigh had drive and ambition and many great plans: plans to attend law school, get married, and someday have children.  Leigh eventually wanted to be involved with an overseas ministry.  It is painful to acknowledge that Leigh would have likely achieved these things had the physician and nurse that treated her taken CAH and her medical needs more seriously.   

Though we are a close-knit family, being through so much together regarding CAH has been one reason for this closeness. I know that at times we all questioned whether or not we could make it through the trauma of losing Leigh.  It is impossible to fully absorb and recover from the loss of so close a family member, and Leigh’s absence will always be painful, but in the last three years our family, both individually and collectively, has worked to reclaim a measure of the fulfillment and joy we lost when Leigh died.

I completed my bachelor’s degree a year early from UC Davis in 2003 with Dean’s List Honors and got married in 2004.  I am employed as a researcher through the State of California and plan to attend graduate school to earn a master’s in Public Health after my husband completes law school.     

Tate just graduated from high school with a strong scholastic record and will be attending University of Nebraska-Lincoln in the Fall.  She plans to pledge a sorority and to pursue a degree in education. 

My parents are nearing retirement and have plans to travel.  They also plan to achieve Leigh’s goal of working in short-term missions overseas.

All of us have faced unique challenges as a result of having CAH, but CAH has in no way dictated what we can accomplish.  Through accomplishing my own individual goals, and with the support of my family and friends, I feel that CAH is not a barrier to any possible attainment.  Having CAH has presented obstacles for our family, by far the greatest and most painful one has been the loss of my sister, but we are committed to embracing future challenges with the strength and joy that Leigh so often showed while reaching her goals.

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