Christopher was our third child – we have two older daughters. He was born in 1980, a perfectly normal child. No complications at birth. He developed normally. But when he was in 4th grade, I received a call to come to school immediately. Something was wrong with Chris. I drove up and the ambulance was there. Christopher was brought to the Emergency Room where they ran a number of tests. I don’t recall if the word “epilepsy” was used, however, all the tests came back normal.

Unusual occurrences

We later learned that this incident happened in the cafeteria, and it was very warm that day. The person who saw what may have happened said he thought Chris fainted. He got up, fainted again and hit his head.

Then exactly four years later, Chris was in the 8th grade, and the same thing happened again. And, again, all the tests came back normal.

Another four years – the summer before graduation, he was working on a playground. Again he was brought to the ER and again all the appropriate tests were done. We went to see the neurologist and I thought we were going to get the same news. Only this time, the physician, looking at Chris said, “You are strong. You can take this news.” And that is when Chris was told that he had epilepsy. The doctor stressed that Chris could live a normal life.

A teenager reaction

Chris was very upset because he had to give up his driver’s license. There would be no baths or swimming by himself. He would have to go on medication – which was Dilantin. Chris began complaining that it affected his short term memory and made him sleepy.

Nonetheless, he completed senior year and graduated 10th in a class of 500. He wanted to go south to play baseball. He was a pitcher. So he went to Stetson University in Florida. That November he called us. It was his freshman year. He said that he had been out and someone switched a drink on him. He didn’t want to take his meds because of this, and he had a seizure.

About five months later, right after he came home from freshman year he had another seizure. Then two days before starting his sophomore year, another seizure. Another medication was added, now he was on Dilantin and Depokote. He went back to school and somehow he had injured his pitching arm. He was depressed, yet he wouldn’t come home. He said he wanted to stay at school and he would come home at Christmas. He complained that the medication was upsetting his stomach.

When Chris came home, we took him to see the doctor who gave him Lamictal and Dilantin and took him off the Depokote. He came home after sophomore year, and even though he had been depressed, he wanted to go back for his junior year. From that point on, we thought Chris was seizure-free.

New joy, then unexpected tragedy

Then came December of his senior year – and for the first time he seemed happy again. He wasn’t complaining as much about his medication. And I remember we talked and said, “Maybe you can go off your medication since you haven’t had a seizure in two years.”

He went back to school for New Year’s Eve – so he could be with his girlfriend. It wasn’t until after he died that we learned that he was having seizures regularly. Even on New Year’s Eve, when he apparently had another one, his girlfriend was trying to get him to tell us that the seizures were becoming more regular and that we should try to find a doctor there for him. But he didn’t want this. He apparently told his friends that if he had a seizure, he didn’t even want them to call an ambulance.

Then on February 21st he apparently wasn’t feeling well. He told his girlfriend he was going to her apartment to take his medicine and study. He would meet her there after she had finished her classes.

I will never forget that day. My daughter called me. She was screaming. “They can’t get Chris to breathe.”

We learned that when his girlfriend got to the apartment, she found him and tried to revive him. She called 911. There was nothing anyone could do. He had been studying in bed surrounded by his books.

Can you imagine how everyone felt? Just 11 weeks before graduation, it was a tragedy that affected everyone. It was devastating for us, his sisters, and his friends. No one told us that with epilepsy there was a risk of death. And to the best of my knowledge, no one ever told Chris.

Because it was an unattended death, there was an autopsy. It showed that Dilantin was at the therapeutic level. There was no evidence of anything else in his body and no abnormalities that would have caused his death. And that is how we learned about Sudden Unexplained Death in Epilepsy (SUDEP).

How could I have stopped this sadness?

This has been so devastating for Chris’s family and friends.

It affects parents always, in everything that happens. The sadness is so pervasive. I look at all those affected, and say, "How could I have stopped such sadness?"

At some point after Chris died, I called a colleague in Washington and asked her to call the National Institutes of Health to find out why SUDEP happens. They sent information and advised me to call Citizens United for Research in Epilepsy (CURE). So I called Susan Axelrod and the first thing she said to me was, "Tell me about Chris."

I remember my words: “He was 21. He loved Florida. He loved playing baseball. He had epilepsy. And he died.”

“What if”

As a member of CURE, telling Chris's story has given me a platform so I am able to speak out and try to change the practice and procedure of physicians to inform patients and parents about SUDEP. I thought that Chris’s doctor was the only one who didn’t inform his patients about this. I have learned that most physicians do not discuss SUDEP with their patients.

I don’t know how physicians can make that decision and not give out this vital information. And I don’t question for a moment the doctors' motives; no one wants a patient to die and in their hearts doctors want to do the right thing for their patients.

I know of no other disease that you can die of and are not informed about it. I am told we don’t know how to prevent SUDEP, that being warned might impact the quality of life and that it would be hard to deal with. But once you are dead there is no quality of life, there is nothing you can do.

I try to be rational. Being confrontational, emotional, or full of blame is not going to accomplish what I hope to. Chris was his own person. Perhaps he still may not have told us about continuing to have seizures. But if he had known of any risk, then maybe he would have had a fighting chance and he would not have gone to an apartment where he would be by himself.

The not knowing, the “what if” is so awful to have in your head. I don’t want any other parent to go through this.

Helping to change policy

I went to the 2006 American Epilepsy Society Annual Meeting and the last day they did a session on mortality. Finally, they are addressing this issue. February 21^st, 2007 Chris will have been dead five years, and little progress is being made. The medical community should look to the work of Epilepsy Bereaved in addressing SUDEP and the progress it has made. It seems that we are trying to reinvent the wheel.

I spoke at the Southern Epilepsy and EEG Society Annual Meeting last May and learned about the procedures in the UK where every patient is given a packet of information and it explains SUDEP. It is very helpful. I am pleading for a policy in the US. When I ask doctors here if they tell patients, the answer is often, “We don’t talk about it because we don’t know how to.”

Chris was in the “at risk” group because of his age, the number of medications he was on, and his uncontrolled seizures. Yet, when I go into CHAT rooms, I see there is a wide range of age groups that die from SUDEP. So I don’t think you can pick and choose who you can tell.

I think informing patients about SUDEP must be done at the initial visit/diagnosis. In Chris’s case -- waiting was too late. Young people at that age are not often forthcoming. They all believe they are invincible.

No parent should have to stand where we stand. There is never closure. The pain will never go away. The worst thing that could happen to a parent is to have a child die. It doesn’t matter how old the child is or how the child died. It is awful. If, as a parent, you think in your mind that something could have been done and you didn’t have the knowledge to do it, it is a horribly cruel burden. What is so sad is that now Christopher’s sisters are married. They have babies. And these babies will never know their Uncle Chris.

# # #

Jeanne Donalty worked with Congressman Sherwood Boehlert in Utica, New York where she served as district director for 18 years. Today she is Secretary on the Board of Directors for CURE. Jeanne, and her husband, Barry, a county court judge, are the parents of Alison, Lauren, and Christopher. Since joining CURE, she has worked to advance the need for new therapies and has helped raise close to half a million dollars towards that effort.

• SUDEP – Sudden Unexplained Death in Epilepsy – Facing the Questions
• SUDEP – Managing Fear
• SUDEP – Supporting the Bereaved
• Sudden Unexplained Death in Epilepsy: What Coroners and Medical Examiners Aren’t Saying
• SUDEP – Facing the Future – What other countries are doing about SUDEP
  

Topic Editor: Steven C. Schachter, MD
Interviewed By Rita Watson
Last Reviewed: 1/31/07