By Shawna Snyder, Big Bear City, California
Who would have ever thought a single injection of the HPV vaccine, Gardasil, could bring my precious daughter to the brink of death? My daughters, Ashlie and Lyndsie, were both injected with the Gardasil on the same day. Lyndsie had no adverse reaction. Ashlie was not so lucky.
Ashlie has always been bigger than life. A girl who we know can handle anything. At the age of 4, Ashlie decided she wanted to dance. She was shy and didn’t like people staring at her, so we knew that this little endeavor would be short lived. We could not have been more wrong. As Ashlie became older, we knew she had found her passion and career in life. She was going to be a professional dancer and she was on her way.
How could we have known one vaccine would change our lives and her life so drastically?
In the middle of June 2009, Ashlie received her first and only Gardasil vaccine. Ashlie’s older sister Lyndsie was also vaccinated with Gardasil on the same day and had no adverse reaction. For that I am thankful.
However, approximately 16 days later Ashlie began to complain that her legs were not working correctly. Looking back, I am not sure what I thought it was, but I had her take some Tylenol. The next morning, I came downstairs and Ashlie was lying on the couch watching TV. She told me that she had crawled from her room and down the stairs to get to the couch. She informed me she could not walk. I asked her to stand. She tried and fell to the floor.
She was quickly taken to our local ER. The doctor threw his hands in the air saying he had no idea and it must be growing pains. She was given crutches and a prescription for steroids. I took her home convinced the doctor was wrong, as I am a mother of 5 daughters and had never witnessed growing pains like that.
Ashlie had been diagnosed with epilepsy when she was 10-years-old. I thought she perhaps had had a new seizure I was not aware of, so I called her neurologist. I was assured it was not a seizure, but to bring her to the ER (a different ER) in the morning as they were very crowded and she would be seen faster in the morning and we would get home quickly.
Later that night, I helped Ashlie in and out of the bathtub because she could no longer walk. I went to hand her something and to my horror discovered that her arms and hands were not working either. She literally could not pick up what I was handing her.
After a few phone calls, I rushed Ashlie to an ER over an hour away, the same ER we were to visit in the morning. I carried her in, and for a crowded ER on a Saturday night, she was seen within 1 hour.
One of the phone calls I had made was to my dad. His friend is a doctor, who told my dad that I needed to ask if it was “ascending paralysis”. While we were with the doctor, I asked him if it was “ascending paralysis” and he said yes. It appeared she had Guillain-Barre’ Syndrome (GBS).
I was asked if she had been sick and I informed them she had not. I could not figure out how she got this.
She was kept in the ER until a room became available in the “step-down” unit or intermediate ICU. At this point I still had no idea how serious this was. Once she was admitted to the hospital and not an ER patient, they handed me a bunch of literature on GBS. My answer to how she contracted GBS was in the first sentence that I read, and it said that you can get GBS from a vaccine. She had just had a vaccine, the Gardasil vaccine earlier that month.
As Ashlie lay in the hospital bed I watched her go from a vibrant young girl to a shell of non-existence. She was unable to walk, she was unable to get up to use the bathroom and as she couldn’t eat, an NG tube was placed in her nose so they could feed her. She was given intravenous immunoglobulins (IVIG), in the hope that this would stop the paralysis and start it descending.
She became delirious, and she began talking like a baby in her sleep. She was in extreme pain and I had no idea what to do, or even still did not realize at this point how serious GBS was.
Within 24 hours things went from bad to worse. Her respiratory system was shutting down. The GBS was paralyzing her to the point that she could not breathe.
She was rushed to the Pediatric Intensive Care Unit (PICU). Within minutes of being there she stopped breathing and they had to “bag” her. I could not believe what I was seeing. My baby girl was dying before my very eyes.
She could no longer talk and would finger spell (sign language) to communicate. They put her on a bi-pap machine to help her breathe and on July 1, 2009 Ashlie was intubated. She could no longer breathe on her own to keep alive, a machine had to do the work for her. Her heart was racing, ranging between 160-180 bpm. It seemed as though her heart would come through her chest. For the next 2 1/2 weeks, I sat and watched as she continued to get worse.
Guillain-Barre Syndrome is most common in older people, not children. It was the worst case the children’s hospital had seen in over 3 years. All treatments done to “reverse” GBS are done on adults. The hospital had to take adult treatments and alter them for a 12-year-old. She had more IVIG treatments done, she had plasmapheresis, MRI’s, and nerve tests done. The damage done to her nerves was horrific. The GBS not only destroyed her myelin, but it went into and began destroying the axon.
Slowly her body began to “heal” and the GBS started to descend. After 3 weeks of being intubated, she began to breathe on her own and was extubated. However, as the feeling came back, she was in excruciating pain. Pain so bad she felt like we were ripping her skin off if we touched her. We remained at the children’s hospital for another week. She was then transported to Orange County to Healthbridge Children’s Hospital for rehabilitation. Ashlie spent another 4-weeks away from home doing physical and occupational therapy 7-days a week. She was tired, her body hurt, her body would not cooperate at times, and we had lots of tears. After spending her 13th birthday in the hospital we decided it was time to go home and start our new lives.
Once at home Ashlie began physical and occupational therapy at home with an in-home health service. We tried to keep life as normal as possible for her. She started going back to dance class immediately, although participation was limited. She went to our local hospital for physical therapy.
After 6-months the therapists said there was not much more they could do for her and she was as good as she was going to get. That was not the answer I wanted to hear. She was only 13-years-old.
I began making phone calls and from there carried out more research. We were told to get her into Pilates with an instructor who had a dance background. We did just that and things started to fall into place.
Although some things fell into place, we noticed that Ashlie’s health began to change also. She was unable to keep foods down. Anytime she ate, she became very ill and everything came out one way or another. We noticed that she would have dizzy spells and pass out. She would have severe nerve pain at times, to the point that she could not be touched by anyone anywhere on her body. She said it felt as if her skin was being pulled from her body again. I have watched her go in and out of consciousness and struggle to breathe. She now has a rapid standing/sitting heart rate.
We have taken Ashlie to many different doctors and specialists. At one point they almost did heart surgery on her to try and stop her from passing out. She has been hooked up to heart monitors for 30 days and at the same time as this was happening, trying to continue to dance.
She has been seen in different emergency rooms over the last 4 years only to be told time and time again, that there is nothing wrong with her and that it is all in her head.
Finally, during the summer of 2013, I was reading a story about a girl who had been injured by the Gardasil vaccine. I never read the comments below because I find them to be rude or critical. This particular day, I decided to read one.
A lady mentioned a doctor who helped her niece. I contacted her and then the doctor. We saw him in Sept 2013 and started treatment in October 2013. It has been a long hard road. Ashlie has completely changed her eating pattern and takes many supplements. She has phone appointments with him every 4-6 weeks.
One of her goals was to become flexible again. A silly thing to most, but to her as a dancer it is everything. She is slowly but surely getting it back. I even watched her do a backbend from a standing position a few days ago. Something I thought I would never see again.
I regret every day giving her this vaccine, but I am so glad she is such a fighter and has not given up. Both mom and daughter are in this together and we will never give up. We hope too that whatever we can achieve for Ashlie can benefit so many other girls and boys who have also been badly injured by the Gardasil vaccine.