Jenny Tetlock was a 15-year-old girl who lost her battle to a rapidly degenerative neurological disease on March 15, 2009. She started developing symptoms just two months after her final Gardasil injection. Her mom, Barbara, shares her story with momlogic.
ML: What kind of child was Jenny? Please describe your daughter, prior to her getting sick.
Barbara: Jenny was very active. She played soccer for many years. She enjoyed school. She liked English, science, and struggled a bit with math. She had some friends her own age. Jenny was raised essentially as an only child, because her half-brother is 16 years older than she. She hung around with us a lot and learned to enjoy and relate to grown-ups. One of the most charming things about her was how well she could connect with people of many ages.
ML: When and why did Jenny get the Gardasil vaccine?
Barbara: We had come back from a sabbatical year in New York, and Jenny needed a Hepatitis B vaccine to get registered for school. Her pediatrician mentioned this new vaccine. He said it was good, and recommended we give it to Jenny. Without much thought, I agreed, and we started the 3 vaccinations. Jenny was 12 when she received her first vaccine. That was September 2006. The second was in November 2006, and the third was in March 2007. In May 2007, she began to weaken. She died 20 months later.
ML: When did Jenny start showing symptoms or signs that something was wrong?
Barbara: In May 2007, Jenny came home from school one day having tripped over a hurdle in P.E. class. It was 1 and a half feet high. All the other kids cleared it easily. A few days later, she tripped again on the same hurdle and fell on her knee. She hurt it badly, and stayed home for a few days. Then she developed a limp that never went away. With some degenerative neurological diseases, you can lose as much as 40% of your motor neurons before you even begin to show weakness. That may have happened to Jenny.
We thought it would get better, but when it didn't, we went back to her pediatrician. We thought, perhaps her legs were different lengths. But no, the doctor said things were fine and gave her strengthening exercises. A month or two went by and we didn't see any improvement. The pediatrician suggested sports therapy. We went to Children's Hospital in Oakland and started several months of physical therapy in August 2007.
In October 2007, things weren't getting better. She then went to a pediatric neurologist, who started tests. In December 2007, we took her to another specialist at Children's Hospital in Philadelphia, PA. He immediately started treatment for multifocal motor neuropathy. Jenny received IVIG (intravenous immunoglobulin). We went home and followed up with a specialist at UCSF. The treatment wasn't working. She was getting weaker. By that time, she was falling too much and went from crutches to a walker. She started taking steroids. That didn't seem to work either. We still didn't know what the problem was, and we hoped the Philadelphia doctor was correct in his diagnosis. He thought she'd eventually recover in 9-10 months after extensive treatment.
In January 2008, we took Jenny to Children's Hospital in Stanford. The Stanford doctor immediately put her in the hospital to do testing, imaging, biopsies, and more. We stayed there for two weeks, but the treatments didn't seem to help. After being home for a few weeks, we went back for a few more weeks. Meanwhile, Jenny was losing her ability to hold herself up. She tried going back to school with an electric scooter, but it was just too hard. She couldn't even write or take notes. She stayed home with a tutor. We were going to the hospital and seeing many different doctors to figure out what was going on. Jenny started new treatments -- chemotherapy in March 2008. We didn't see any improvement at that point either.
Around April, we noticed that her breathing was compromised. Her FVC (forced vital capacity) was about half of what it should be. Eventually she needed help with breathing, so she went on a noninvasive ventilator. She was also given a feeding tube.
In June/July 2008, we tried to figure out how to adapt with life at home. We had nursing help. Jenny was losing her ability to turn over in bed. I slept with her and turned her whenever she wanted, trying to keep her happy and comfortable. By now, she was in bed most of the time. We had two goals. One was to find a cure, and the other was to maintain her quality of life. We wanted to keep her busy, happy, and distracted. Friends, family, and specialists came by. We had wonderful friends helping us look for other children who were similar to Jenny. We set up a website. We reached out to doctors all over the world to find treatments, experimental drugs, and medications. We tried so many things. Sometimes we thought she was getting better. Maybe the disease was slowing down or even reversing. Then she'd get a little worse, and we knew we were wrong.
In August/September 2008, school started. We got a tutor for her and overnight nursing help. Jenny had physical and occupational therapy several times a week. She was using the noninvasive ventilator around the clock. She also had a computer to help her communicate. We weren't making a lot of progress, although we kept thinking we might be. Christmas was a low point. She felt miserable. There was nausea from the medications and treatments, air in her stomach from the ventilator, and other types of pain. We worked hard to keep her feeling as good as possible.
Her birthday came on January 12th, 2009. At that point, we felt like there was actually some strengthening in her hands. She was getting more control. Then in early March, she started having trouble breathing -- despite the noninvasive ventilator. We took her to the hospital and brought her home. But things got worse. On March 9th, 2009, we took her to UCSF. She was losing her voice and her breath was very labored. She died on March 15th, 2009.
ML: When Jenny passed away, what was believed to be her cause of death?
Barbara: There was always some degree of controversy between those who favored the motor neuron diagnosis (juvenile ALS) and those who thought the disease process was autoimmune in causation. At this point, medical opinion has swung quite decisively toward the autoimmune theory, which is more consistent with the hypothesis that the Gardasil vaccine was the trigger.
ML: How did you link Gardasil to a possible cause of death?
Barbara: During the Stanford hospital stays, we discussed Jenny's medical history, and initially only a few physicians thought there might be a link. Nonetheless, we filed Jenny's case in a federal database called VAERS (Vaccine Adverse Event Reporting System) and tried to find comparable girls. The system is outdated, underutilized, and extremely hard to use. Now we have found at least one comparable case that we have been told was filed by Merck, the manufacturer of Gardasil. But the information is too vague and incomplete for the CDC to contact the family. To the best of our knowledge, Merck has yet to provide the necessary information. I want to take this opportunity to beg Merck to help our doctors and the government agencies to identify any other cases that might be comparable. I know that Jenny would want us to do everything humanly possible to make sure no other girl ever suffers the pain, humiliation, and misery that she went through in the last two years of her life.
ML: Did anyone from Merck or affiliated with Merck contact you or try to reach you?
Barbara: No. As far as we know, Merck has not responded to requests for information, either from us or from Jenny's doctors. There are two types of information that experts investigating these cases need. First, Merck needs to share widely all information about any other girls with comparable symptoms. Second, Merck needs to answer -- in a transparent and scientific way -- the serious questions that have been raised about batches of vaccines that might be linked to manufacturing problems. There have been reports of bad batches. We have obtained the lot numbers from Jenny's vaccinations and asked how the lot numbers relate to the batches. We have been told that key information that experts need to test hypotheses about bad lots -- key information like how many kids received vaccines from each lot -- is considered proprietary.
ML: Is there a way legally to get them to disclose the information about the lot numbers or bad batches of the vaccine?
Barbara: I don't know, but I hope so. From a humanitarian point of view, Merck should have been much more forthcoming with information that could help the scientists working on this problem. But I see no evidence of it happening. It is a sad state of affairs if our government can't get this important information. It is also ironic, since pharmaceutical companies are protected from lawsuits involving adverse events related to the vaccines. In the 1980s, the government set up a National Vaccine Court, designed to keep pharmaceutical companies investing in vaccinations. Parents pay a surcharge on each vaccine, and that money is used by the National Vaccine Court to pay families who have experienced adverse events that followed the vaccine.
ML: What is being done now in terms of trying to figure out Jenny's cause of
Barbara: Stay tuned. Researchers at major research universities are carefully studying Jenny's case, and those of possible comparables. The evidence should be out in a few months. At least some of the evidence will very likely be published in peer-reviewed scientific journals. I believe it will soon be much more difficult to deny the evidence linking Gardasil to devastating side effects in a small number of high-vulnerability cases.
ML: Have any families contacted you about their daughters? Or have you found anyone else who went through what Jenny did after taking Gardasil?
Barbara: We found another young lady who has since passed away. Her mom contacted us through our blog. She's Mormon, and had the Gardasil vaccine prior to going on her mission. She came home from her mission early due to weakness, and passed away in August 2008. There are many deeply disturbing similarities, and her case is being investigated by the same researchers.
Then another mom contacted us through the website. Her daughter experienced weakness after the Gardasil vaccine, and the young lady is currently in braces and having a great deal of trouble walking.
I think the story will slowly but surely come together. If any of your readers know of teenage girls or young adolescent girls who have experienced severe weakening or paralysis, please ask them to contact us. Jenny's website can be found by Googling "Jenny's Journey." You can reach us from that site.
ML: Is Gardasil to blame for your daughter's death, in your opinion?
Barbara: Personally, I believe that Gardasil is the most plausible explanation. But it doesn't matter what I think. What matters is that a number of prominent medical scientists at leading universities now believe that Gardasil is the most likely explanation for Jenny's case. The next big question is going to be why Jenny and perhaps a small number of other girls? And why do millions of girls who get the vaccine do just fine? That is a mystery waiting to be solved. Important clues are already starting to come to light. And I will be glad to update you again as the story unfolds.