I am a single mother of four children, 2 boys and 2 girls. We live in Lake Station, Indiana. Before my oldest daughter Zeda got sick, we had a normal life. I worked a full-time job. 13 year old Zeda was a cheerleader and straight A student. She was also a big help to me with my other children.
I have always done my best to keep my kids healthy. I had them get their wellness check-ups and they always got whatever vaccines the doctor suggested. All my kids were completely healthy, other than the simple colds here and there. Completely healthy, that is, until it was time for Zeda's well visit on November 5th, 2008. And then her life, as she knew it, completely changed along with the rest of our family.
Zeda’s pediatrician suggested the Human Papillomavirus (HPV) or, as I know it now, the Gardasil vaccine. I thought “OK, this is what I am supposed to do to keep her healthy.” My doctor said to do it and so we did it. I knew absolutely nothing about the vaccine, other than it was for girls her age. I was not told of any side effects, other than the potential for soreness around the injection site.
A week after Zeda got the shot, she started to complain here and there, of a headache and of feeling sick to her stomach. Perhaps like some of your own daughters at her age, Zeda was a Drama Queen. So when she would tell me these things, I would tell her to lie down, murmur to her that she had probably had a long day, or I would give her some Tylenol. It never would have occurred to me that those little signs were red flags. Not until November 28th, 2008, when we were on our way to pick up her little sister from a friend's house. While in the car, Zeda kept dropping her phone. Suddenly, my son said, "Mom, I think something is wrong with Zeda!" She was crying, she was drooling, and her eyes were not looking right. She looked to me as if she had just had a seizure. I knew this because my brother had seizures. I rushed her to the ER.
This is where the confusion started with her diagnosis. First, they accused Zeda of overdosing on drugs. They yelled at her, in her face, that she needed to tell them what she had taken. I was so scared. I had no clue what was going on, and these doctors and nurses screaming at my daughter. Zeda was as scared as I was. I believe she knew that something was seriously wrong. She was confused and not able to say what she wanted. And then she had another major seizure in the middle of the ER. That is when they finally started to take us seriously. By then, they had her drug test results which were negative for any illegal drugs.
After those horrible few hours, they transferred Zeda to our local hospital, along with a pediatric neurologist and Zeda’s pediatrician. I thought we would surely get some answers there. They started running all kinds of tests. At this point, Zeda was unable to say a whole sentence; she could only say a few words at a time. She was so scared and was crying very hard. We had an MRI, a CAT scan, an EEG, and a spinal tap done. Whatever they were looking for, they did not find, all the tests were negative. The MRI did show a "shadow" on the right side of her brain, which they were now treating as viral encephalitis. But as Zeda's health deteriorated, our pediatrician continued to say she was doing this to herself, that she was "faking" it.
In the four days we were at our local hospital, Zeda had stopped talking, stopped eating, stopped walking, and was now urinating on herself. It was the nurses, NOT our doctor, who said something was truly wrong! Her symptoms were not taken seriously until a psychiatrist came in, tested her and issued a professional opinion that she wasn't faking it. One nurse suggested we go to a specialty hospital, as we were getting nowhere.
Within 45 minutes, we were flown to Riley Hospital for Children in Indianapolis. There, they continued to accuse her of doing this to herself. They installed 24-hour video surveillance on Zeda for about two weeks to try to catch her in the act of faking it. And they continued to perform test after test, all of which came back negative. She developed had uncontrollable movements, extremely high heart rate (up to180 bpm), high fevers including one that was 108.7 degrees, and at one point she was placed in a medical induced coma. Yet they couldn’t tell us what was wrong or why it was happening, so they instead spent most of their time blaming us and trying to prove that she was faking it. No one would go on the record to say that the Gardasil vaccine did this to Zeda.
Zeda eventually lost lung functioning and was placed on a ventilator for several months. A tracheotomy and feeding tube were put in as she could no longer eat or breathe on her own. We were at Riley Hospital for four months and her doctors still could not tell us what happened to her, only that they are sure it was not a vaccine reaction. This despite dozens of cases of similar reactions in previously healthy girls following the HPV vaccine.
Today, Zeda still breathes through her trach and eats with a tube. She lives her life in a hospital bed in our living room, mostly non-responsive, with round the clock care and daily nursing visits. This has become the defining struggle of my life… I struggle every single day to do what I can to get her better.
I am here to tell you that I didn’t know. And I think many parents are like me, and they don’t know either. I thought vaccines would keep my children safe and healthy. I didn’t know that vaccines could do this. No one ever told me. My doctor never told me the risks. I never saw anyone or anything that told me this could happen. I’m not telling you not to vaccinate. But I am telling you that people who pressure you to vaccinate don’t own the consequences. Only you, as parents, do. And if you do vaccinate, you better be really comfortable about the need for each vaccine. Because every time you vaccinate your child, there is a risk. It’s important that parents understand what’s at stake.
I deeply regret my decision to allow Zeda to get this shot. She has lost all quality of life. I would do anything to get her better, but no one has any answers for me. They still don’t believe it was the vaccine. And now that she’s sick, no one knows how to help my baby girl.
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