My daughter, Chelsea, began having seizures on her 11th birthday in September 2003. We had invited several of her closest classmates over for a slumber party, complete with disco balls and strobe lights. A few hours into the party, a few of the girls came up pleading with us to have Chelsea stop being so dramatic because she was scaring them. She was known for her theatrics. It didn’t take long for us to realize that she was having a seizure. We’d seen them before as my Mother started having seizures in her late 50’s. We knew what this looked like. We knew what to do.
Over the next few years, Chelsea continued to have occasional seizures, but they were few and far between. She averaged 3-4 a year and actually even went a full year without having any. She also had absence seizures, but they never really affected her daily life. They certainly never defined her. Chelsea loved life! She lived every day to the fullest and never ceased to amaze us with her creativity and imagination. From believing she was a baby fox or a mama kitty as a young girl, to pretending to be a mermaid lying helplessly on the floor inside her bedroom (you know, Mermaids can’t walk); there was never a dull moment. She had a pink alien friend named “Sweetie” who went on many wonderful adventures with her. To most, Sweetie looked like a simple pink baby blanket. The stories she would write and the pictures she would draw amazed us. She loved to read and would get on and off the school bus with her nose in a book; she just couldn’t get enough. As she grew into the beautiful young woman that she was, her love and appreciation for life and those around her grew even stronger. Her love for shopping and design labels grew too. Chelsea’s room was immaculate and her school notebooks were color-coordinated and uniquely decorated; complete with a Disney Princess folder inside each one. She took on most school assignments with great enthusiasm. There was no such thing as a simple book report. Instead, they were projects that typically involved a trip to a store for special art supplies to make them just so.
No one ever treated her seizures as though they were a big deal. We called it a “seizure disorder”. We never even heard the word “epilepsy” associated with her seizures until we asked for a copy of her records. We wondered if her seizures had anything to do with her braces as it seemed as though each time she had her braces adjusted, she would have a seizures within a day or two. We never researched what could happen – we thought we knew having dealt with seizures in my Mother since 1986. We were always looking for that cause. Hormones, heredity, braces, diet, stress – each time, I asked these questions, I was looked at as though I was crazy and certainly overly protective of her. I know now, that each of those could have played a part.
Fast forward to the summer of 2007. One morning, my sisters and I were chatting on line and realized that none of us had heard from my Mother. We had all left messages for her the evening before. It was not like her to not return a call. I was the closest so I headed over quickly to check on her. When I arrived, I found her face down on her living room floor and it was obvious she had experienced a seizure and had passed away several hours earlier. I thought losing my Mother would be the hardest thing I would ever go through. Other than her seizures, she was the picture of health. The week after losing her, I made appointments with both her Neurologist and with my daughters. I was obviously concerned and needed to know if I had anything to worry about with respect to my daughter’s health. I never knew that a seizure could take her life.
In both cases, I was told that I had nothing to worry about. Nothing at all, other than the obvious risks of a hard fall or accidental drowning, which we knew. I was told it was a fluke and most likely had to do with my Mother’s age (she was 77 at the time) and her heart. We went on along our merry way.
In the Fall of 2008, as Chelsea was going through her final adjustments of braces, her seizures began to be more frequent and become more violent. This is when I asked for her medical records and learned she had epilepsy. Her neurologist elected to change her medications as he always made us believe that all we needed to do what find that right medication to keep her seizures from breaking through. By early 2009, she had become so unstable and stress was a huge trigger for her. We placed her on a home-bound study program to lessen her stress of embarrassing herself at school and her seizures started to lessen somewhat. I remember her telling me that, even though it was no fun to be home this way, she really treasured the time she and I had together.
In April, we started to reintroduce her high school classes into her daily routine very slowly. We made sure that she stayed home until about 9:30 as she was often more stable later in the morning. My husband and I made it our routine to make sure that she got her morning medications about an hour before her feet hit the floor as that seemed to help. Every morning I would drop her off at school, I would just watch her make it through the front doors of her school and ask God to protect her.
Early one Sunday morning, my husband went down to give Chelsea her morning dose like he often did on the weekends as I had been covering weekdays. I was still asleep in bed. I heard him come to the top of the stairs – I thought he was having a heart attack because he was almost crawling and could hardly speak. He mumbled the words, I can’t wake Chelsea, and I was up on my feet and down two flights of stairs in less than 10 seconds I believe. He didn’t know how to tell me she wasn’t breathing. I could not believe what I saw. My beautiful 16-year old baby girl was lying face down in her bed, not moving, not breathing. I didn’t know how to do this. How could I possibly have lost the love of my life, the center of my family? I lifted her and she was stiff. She’d been there for a while. How did I not know my baby was in trouble? She was my life. When I lifted her, her head turned and all I could do was look at how beautiful she was. I crawled into bed with her and just held her. How do I do this?
We had to call her older sister and brother and give them his horrendous news. Our children were best friends and very protective of their little sister. We waited for them to arrive and have the opportunity to say goodbye to Chelsea as I remembered calling 911 immediately upon finding my Mother and my sisters were robbed of that. I could not believe this was happening.
We begged them to not do an autopsy on our beautiful daughter. We could not emotionally deal with the thought of anyone hurting that precious being. The cause of death on her certificate was suffocation, but that never made sense to me. Her seizures were never more than about 15-20 seconds and was only post ictal for a minute or so. I often buried my face in her pillow and could breathe – it just didn’t make sense. We were told we could bypass the autopsy if her neurologist would sign off on the death certificate, which he did. I know in my heart that if someone would have taken the time and explained the importance of an autopsy – to learn if her death was SUDEP related and how important it was to know this, I would have been able to understand, even in the state of mind I was in. We did not hear the term SUDEP until about 4-6 weeks after her death. Without having the strength to even talk, we were presented with case after case of other families who had lost loved ones in the exact same manner. Face down, unwitnessed and in their bedding. Most of these families learned the term SUDEP from me. Imagine the shock and anger! I was in two neurologist’s offices asking for this information and was not given it.
Chelsea was as beautiful on the inside as she was on the outside. She never wanted to be limited to just one group of friends; she genuinely wanted to be friends with EVERYONE! She loved who she was and even loved her name! It was important for her to be her own person and often referred to herself as a “dork” with pride! Chelsea touched many lives and we are amazed at how many she continues to touch even after her passing. In her memory, The Chelsea Hutchison Foundation was created and is designed to assist people living with Epilepsy. Funds raised by her Foundation provide grants for fully-trained seizure-response dogs and life-saving night-time movement monitors for those in need, to educate the public about SUDEP, and to provide support to those who have been affected by SUDEP. We believe strongly that had we even known to be concerned and had the opportunity to monitor her, we may have also had the opportunity to save her. Her first night-time seizure was the one that took her life. We realize there are no guarantees, but we as a family live with the what-if’s every day. I am contacted on a weekly basis from families we have helped with monitors or service dogs, who believe because they had those items were in place, they were able to save their loved ones.