I am every parent’s worst nightmare. My child died. I am the reality that no parent wants to face. I'd love to be writing, "A Mother's Story," that finishes with a happy ending. This one, like so many, ended in tragedy. 

We in the medical profession could fill volumes with tragic stories. This one is different, because it is mine. It is a tragedy of omission. It is the tragedy of silence. It is the tragedy of passivity. The course of events have forever changed my life.

I am a member of a club where dues would gladly be exchanged for the price of an Ivy League education. So many of my colleagues who proceeded me in membership have been looked upon with pity. I now live with recognition of those stares, whispers, and avoidances. I have a PhD in grief and never stepped inside an institution, nor spent a dime to get it. In our realm of medical analytical thinking, grief is an abstract concept. I, like many, am an enigma the untouched don't understand.

My Carei

Carei

It was six days before Christmas and eight days before my wedding. The house was decorated for the holidays and filled with wedding gifts, Christmas presents, and excited anticipation. My children were eager to be part of a blended family and the end of the era of my role as single parent. Carei, “the romantic,” was particularly excited about her upcoming first experience as a maid of honor at the age of 17. She loved her floor-length, green velvet gown with matching shoes. She frequently dawned her elegant outfit in the weeks preceding the wedding, practicing that future walk down the church isle.

There were so many last minute things to do as the days clipped by. It was the last day of school before the holiday break. My son was staying the night at church for a lock in, and Carei had a date with a new young man. As I had done for years, I parented by phone gathering information regarding their whereabouts. 

When I talked to Carei from the operating room I worked in at 6:30 p.m., she complained of feeling very tired. She never missed an opportunity to go out on a date. She had worked at the opening of the Dave and Buster's the night before until 2 a.m., got up to go to school at 6 a.m., then worked out at the health club after school. It was reasonable that she was tired. I encouraged her to get up and take a shower.

I told her she would feel better, and she could make it an early evening. I signed out the narcotic keys at 7:25 p.m., glanced at the phone, and shook it off knowing the kids would page me if they needed me. I have been known to be an overprotective mom at times. I stopped by Foley's in Cherry Creek for a last minute gift certificate for my oldest daughter, then headed home. I arrived at 8:20 p.m.

The house was dark as I made the rounds on the first floor turning all the Christmas lights on. I noticed the basement was dark except for the flickering light of the TV. Why is it kids can never manage to turn everything off?

“Oh no! Carei forgot to get up. She's going to be late,” I thought, as I rubbed her back calling her name. 

Her arm was hanging off the couch. I could see by the light of the TV it was mottled from lack of circulation. My resuscitative efforts, and those of the paramedics, were a gallant attempt to save her life until she was pronounced dead at Swedish Hospital at 9:15 p.m.

How does this happen?

Children are not supposed to die. I was supposed to go first. The events that followed are a blur except for the word DEAD. It was the beginning of a journey I never dreamed I'd take.

Carei was a beautiful, full strawberry blonde. Active and challenging, developmentally on target. At 14, she was diagnosed with epilepsy. She went through the gamut of inpatient and outpatient testing, resulting in a diagnosis of idiopathic epilepsy. Our job was to move forward through the battery of pharmacological regimens (8 in 3 years) in search of one that brought good seizure control for her predominantly partial complex seizures. Carei only had a total of four grand mal seizures.

All of us have recollections of our first exposure to epilepsy. The stigma, the fear of tonic-clonic episodes, the restrictions, but not death. People don't die from epilepsy. Carei did; her death certificate reads "cause of death SUDEP," (sudden unexpected death in epilepsy). Dr. Michael Doberson, the Arapahoe County Coroner, was nice enough to put together some information on SUDEP for me after performing Carei's autopsy. Dr. Barbara Reed encouraged me to write this paper after losing a friend and fellow MD to SUDEP in 1999.

SUDEP is defined as sudden unexpected witnessed or unwitnessed non-traumatic and non-drowning death in patients with epilepsy with or without evidence of a seizure and excluding documented status epilepticus in which postmortem examination does not reveal a toxicological or anatomic cause for death.

This can't be. No one told me she could die. No one ever mentioned this pneumonic. We were cautioned about the importance of regular medication schedules, about avoiding alcohol, not getting too tired, and maintaining proper nutrition, as well as no tub baths alone. But the critical nature of this advice was never stressed.

Here I began my search for the truth.

In my job I interface with countless physicians. The majority have never heard the term SUDEP. Dr. Bill Warmath, a neurosurgeon with Kaiser Permanente, was our neighbor and on scene the night of Carei's death. He had never heard the term SUDEP. After working for Medtronic Neurological, I was stunned and amazed at how many physicians I met never heard the term SUDEP.    

When I asked Carei's neurologist why she never mentioned it, she told me, "We don't like to alarm patients when they are already in a somewhat protected state. She is not alone; there seems to be a trend toward this code of silence regarding SUDEP. 

Withholding this information helps no one. 

Clearly there isn't a bounty of medical information surrounding SUDEP. There is merely a paragraph in the medical text. Research in this field has been limited. SUDEP is an end point, not something with hallmarks of treatment. The small amount of available literature consistently identifies risk factors. It is realistic to expect patients to take responsibility for themselves in their own care. Sharing information with them regarding the potential for SUDEP may be upsetting for many, but this knowledge may foster better compliance and follow-up. This may also prevent families from feelings of betrayal by the doctor should a sudden death occur.

Proper post mortem identification in epilepsy deaths will bring useful clues for research. Dr. Mike Doberson and I have spoken to coroners to promote identification and understanding of the postmortem pathological hallmarks. Families need and deserve to know why their loved one died. A death certificate stating unknown cause of death is most unsettling.

One mother contacted me regarding her son's death certificate, which read "unknown cause of death." After Mike reviewed the postmortem findings, it was clear her son's death was SUDEP. The parents asked the Larimer county coroner to reclassify his death, stating causation gave them some closure.

The outcome of this information encouraged Dr. Doberson to do a retrospective look and reclassification of 23 epilepsy-related deaths to SUDEP in Arapahoe County. Denver County has also participated in a retrospective review and re-identification. I commend Mike on his commitment to this effort.

It is time for serious public and patient education about SUDEP. It wouldn't be prudent to withhold cardiac education or diabetic education from patients or to minimize the potential for respiratory distress in asthma patients.

In this era of managed care, with all its financial implications, physicians are finding less and less to feel good about. Those who remain dedicated to survival and their Hippocratic Oath, have a chance to help and "do no harm". You can spread the word, no matter what your specialty is. To your friends, family, and your patients. 

Knowledge is power. Omissions can be DEADLY.

Adapted from an article written by Linda Coughlin Brooks RN, BSN, CT, that was originally printed in a journal of the Colorado Medical Society in 2005.

Linda is the SUDEP Institute Bereavement Support Facilitator; she contributes regular articles as part of our bereavement support services. You can contact Linda at sudep@efa.org. Watch for future articles and learn more about our support for bereaved.

Authored By: 
Linda Coughlin Brooks RN, BSN, CT
Authored Date: 
08/2005