The husband of my friend and former student Allison Austin suddenly died one year ago in their home outside of Washington, D.C. He was the father of two boys aged four and six, and young himself, 42 years old.
I knew him only from Christmas card photos, a friendly-looking, dark-haired man, mildly overweight, clearly devoted to his wife and boys. The loss to his family was, of course, devastating.
His death certificate states that he died of a rare complication of epilepsy called SUDEP (Sudden Unexplained Death in Epilepsy) that is little known in America, even among patients at risk.
The cause is unknown. No cure is available. Nevertheless, a grassroots movement is forming among people who have lost love ones to this condition, including Allison who asked me to write about it.
It will take me two weeks and two columns to tell Jeff’s story. I hope you’ll stay with me for this.
About 3 million Americans have seizure disorders. Each year, a tiny percentage of these people die of SUDEP. Most of the victims are young, in their teens or early adulthood.
How do we save them?
Allison can’t tell her story without tears, and I couldn’t listen without tears but we talked anyway using Skype.
She asked me to do what I can to get the word out about SUDEP. If the acronym makes you think of SIDS, Sudden Infant Death Syndrome, the comparison is appropriate as you will see.
Jeff had his first seizure, a grand mal or tonic-clonic seizure, on Jan. 30, 2012. It came in his sleep after a fast and exhausting trip with his dad to Florida to watch the Daytona NASCAR race.
Thinking at first he was having a heart attack or stroke, Allison called 911 and got Jeff to the hospital, where they diagnosed a seizure but found nothing else wrong. He was discharged the same day with a paper listing the things he shouldn’t do: no swimming, no climbing ladders, no driving for six months.
The neurologist they visited the same day said that Jeff had a seizure disorder, not necessarily epilepsy, and that he had a 50-50 chance of never having a seizure again.
When Allison asked what to do if Jeff had another seizure, the doctor said, “You don’t have to call 911. You don’t have to go to the emergency room unless he falls and hits his head.”
The neurologist gave them a list of “don’ts” like the one from the hospital, and Jeff and Allison mostly discussed how he would get to work without driving.
A scientist by training, Allison was worried but not panicked by this new development in their lives. She and Jeff had been together nine years. They had a supportive family living close by. All was well.
One month later, on Feb. 26, at 5:30 a.m., Jeff had a second seizure. Although it was frightening, he did not fall and hurt himself so Allison didn’t call the paramedics. A couple of hours later he was well enough to come downstairs from the bedroom.
Jeff let his sons jump around on him a little but said he felt tired and nauseous. Allison telephoned her in-laws who offered to take the children so Jeff could rest. After the boys left, he went upstairs to sleep.
Allison checked in on him, spoke with him once, and texted a few friends saying ‘he’s had another seizure but he’s doing OK.” At 10 a.m. she took a shower.
When she got out of the shower, she went in to Jeff and found him face down in the bed, not breathing. She called 911 and commenced CPR. The paramedics arrived quickly and worked on Jeff for an hour and a half, but he never regained consciousness.
A young husband and father was gone.
If you try to imagine the guilt and misery you would feel about having taken that shower, about having left your husband alone, you’ll begin to understand how upset Allison is about not being warned about SUDEP.
If she had been warned, she would not have left him alone. Most deaths from SUDEP appear to occur when the patient is unattended, but doctors don’t know why.
How can doctors warn people about SUDEP without terrifying them? Are warnings the best course of action, considering that the condition is very rare? This information can create nightmares, especially given the incompleteness of current research.
Should doctors warn only those most likely to be affected, people in specific subgroups of epilepsy? Jeff did not belong to that population.
It takes a long time for a newly identified syndrome to be studied and to move through the medical literature to the doctor on the street. Physicians in Europe, Canada and Australia began publishing about SUDEP before Americans (about 15 years ago), but they still argue about patient disclosure.
This dilemma extends to other illnesses. It took many years to work out preventative behavior for SIDS and to inform the general public.
In addition, we patients vary in how information we want immediately after being diagnosed with a new disease.
A physician who knows you well is most likely to give you information at a rate and in a way that works for you. But how often, in this era of specialists and speedy appointments, does that happen?
Next week I’ll report on what Allison thinks we should do.
— Marion Franck lives in Davis with her family. Reach her at firstname.lastname@example.org