Archive | July, 2011

Carl’s Story

29 Jul

Many of you may have read Lori Buher’s report here on Parents Who Protect regarding a local Seattle meeting to determine whether meningococcal vaccine should be recommended for infants.  Some of you may have wondered about Lori’s experience with meningococcal.  She shared her story with Mother Talkers a few months ago:

Carl was 14 when he contracted meningococcal meningitis (sometimes called bacterial meningitis). Healthy as a horse, Carl was a freshman at our small town high school. He was playing two sports, fall basketball and football. He’d always been a good student and was studying hard, playing hard and, other than a stubborn cold, in perfect health.

That all changed when he became a victim of this horrific vaccine-preventable disease. Within 24 hours Carl had gone from healthy to fighting for his life in a medivac helicopter headed for Seattle. As we followed in our car, both Curt and I were in shock. We had no idea what was ahead for Carl or for our family.

To read the full story, visit Mother Talkers here.

Numbers, Numbers, Numbers

27 Jul

Numbers, numbers, numbers.  I have spent six weeks in the hospital with my elderly mother, who is very ill.  I watch the numbers on the machines to which she is hooked up.  Blood pressure, pulse, respiration, oxygen saturation.  When do I need to get up and get a nurse.  Is she being monitored closely enough.  It reminds me too much of 13 years ago, when my older son contracted meningococcal meningitis, a deadly form of bacterial meningitis.  For 26 days, my husband, younger son, and I spent our days watching numbers.  It was one of the few ways we could get a grasp of the disease destroying our beautiful son’s body and mind.  It is a feeling of total helplessness, seeing your child so sick, and knowing you can’t do anything to help. 

I don’t want any other parent to sit in a hospital room and watch numbers, panicking at any change in the numbers, waiting for something good to happen, and then it doesn’t.  Your son dies, and then you find out it could have all been prevented with a vaccine.  How do you go back.  You can’t.  You’ve lost.  The only thing I can do is work as hard as I can to prevent this from happening to other families.

Now there are other numbers, numbers which upset me as a parent.  Discussions on how many infants have to die before an infant meningitis vaccine, approved by the FDA, is recommended by the CDC.  Is it 10, 15, 20?  Shouldn’t all infants be protected?  Ask a parent who has lost a child, and you have your answer.  What is your child’s life worth?

What I have learned in these 13 years, “Vaccinate, Vaccinate, Vaccinate.”  Not just for meningitis, but for all vaccines for which your infants, adolescents, and teens need.  Vaccines are the key to protecting our children.

One Life is One Too Many

21 Jul

There is not even 30 minutes that go by, where I am not thinking about Evan, my beautiful son who died from bacterial meningitis, a potentially vaccine-preventable disease.  Even in my sleep, I have nightmares, in which Evan is dying, and then I wake up with my heart pounding, because it was not a bad dream, but a horrible reality I live with every day.

Then I think of all of the other families who have lost children to vaccine-preventable diseases, or had their children permanently disabled by the disease.  Then I thank God that now there are meningitis vaccines to prevent meningitis in infants, a very vulnerable population.  My beautiful grandchildren will be protected from the disease that took their uncle, a relative they will never know.

I couldn’t wait to be a mom and just loved my children with all of my heart.  My best memories were of taking both Evan and his brother to basketball, baseball, and soccer – sometimes all three coincided.  It was crazy, but I miss those days so much.

Nothing ever prepares you for the loss of a child, which is the very worst that can happen.  This loss is even made worse when you find out your child didn’t have to die.

Right now the CDC is wrestling with the decision on what to do with newly licensed infant meningitis vaccines.  Are there enough cases to warrant a recommendation?  What is the cost to society?    Is the vaccine safe? 

To those questions, I answer, how many cases do there need to be.  If it’s your child, then that one case is all you can focus on.   Any life saved is worth it. The cost to society – how can you put a worth on a human life?  The government spends millions and millions of dollars on everything from pork barrel spending to other frivolous expenditures.  But the bottom line is, what is more important that our children, the future of our country.   Millions of dollars are spent to extend the life of elderly patients with end-of-life conditions.  Why not spend money on those infants just starting out?    The  last question is if the vaccine safe.  I have confidence that if the FDA recommends a vaccine after it has seen years and years of rigorous testing by the vaccine manufacturer and held to the highest standards by the FDA, then the vaccine is safe.

The CDC has tried to engage the public in discussions about infant meningitis vaccines, with public sessions in New Hampshire, Seattle, Chicago, and next week in Denver.  I can’t say that I have confidence that the average parent was invited to these public sessions.  I know that advocates for the vaccine and anti-vaccine groups were represented.  But the average parent, the parent of an infant whose life could be at stake, where were those parents?

To me, the bottom line is protection of our infant children.  If a vaccine can save even one life, let’s save it.

The Thoughtful Choice

20 Jul

By Trish Parnell

I remember lining up at school in the ‘60s to get vaccinated against smallpox and a few other diseases for which there were vaccines.

I also remember the years when my brothers and I took turns at getting measles, mumps and other diseases for which there were no vaccines.

In the end, we three were fortunate—no permanent harm from our maladies.

Fast-forward 30 years. My daughter was four months old when she was diagnosed with hepatitis B. She had not been vaccinated and subsequently developed a chronic infection.

It all sounds mundane when read as words on a screen. But in those early years, the heartache and anger I felt at having my daughter’s life so affected by something that was preventable . . . well, it was almost more than I could bear.

But again, we were fortunate. After years of infection, her body turned around and got control of the disease. Although we have bloodwork done every year to keep an eye on things, she has a good chance of living the rest of her life free of complications from this infection.

Over the years, I’ve met other parents whose children were affected by vaccine-preventable diseases. Some, like Kelly and Shannon, chose not to vaccinate their kids and ended up with horrible consequences. Kelly’s son Matthew was hospitalized for Hib and they came within a breath of losing him. Shannon did lose her daughter Abigale to pneumococcal disease, and almost lost her son. He recovered and was released from the hospital, at which time they had a funeral for their daughter.

Because of my job, I talk to and hear from many families with similar stories. Some children have died, some remain permanently affected, and some have managed to recover.

Also because of my job, I hear from parents who believe vaccines are not safe, and that natural infections are the safer choice. I understand and have experienced the emotions we as parents feel when something happens to our children. In a way, I was lucky. I knew exactly what caused my daughter’s problems. A simple test provided a definite diagnosis.

If we can’t identify the cause of our children’s pain or suffering, we feel like we can’t fix it and we can’t rest until we know the truth. When the cause can’t be found, we latch onto if onlys. What could we have done differently to keep our kids safe? If only we hadn’t taken her to grandpa’s when she didn’t feel good. If only we hadn’t vaccinated him on that particular day. If only. The problem is, the if onlys are guesses and no more reliable routes to the facts than playing Eenie Meenie Miney Mo.

The deeper I go into the world of infections and disease prevention, the more obvious it is to me that the only way to find the facts is to follow the science. Now granted, one study will pop up that refutes another, but I’ve learned that when multiple, replicable studies all reach the same conclusion, then I can safely say I’ve found the facts.

In our family, we vaccinate because for us, it is the thoughtful choice.

Trish Parnell is the Director of Parents of Kids with Infectious Diseases (PKIDs).

CDC Public Meetings on Vaccine Schedule (A Personal Account)

14 Jul

By Lori Buher

The CDC is holding meetings throughout the country this summer to ask for public input about adding a recently approved meningococcal vaccine to the current recommended vaccination schedule for infants and toddlers.  We attended the meeting held in Seattle this week.  I was touched by the sincerity of the parents attending.  They want to protect their children, but many have doubts.  When our children were small, my husband and I did not question the childhood vaccination schedule.  We simply followed our pediatrician’s advice.  Today, some parents do not feel that same confidence in our medical professionals.   They have doubts; doubts that are fueled by the emotional debates going on throughout the country.

As the mother of a survivor of meningococcal disease, there is no question in my mind that the vaccine should be added to the schedule.  Carl was 14 when the disease attacked him.  The horrors he survived included amputations, months of painful skin graft surgeries, years of healing before he could begin to walk again.  Do I want every baby to be vaccinated against meningococcal meningitis, rare though it might be?  Of course I do.  I can’t imagine any parent of any child who has been a victim of meningococcal disease that does not believe in vaccination.  The challenge I saw clearly at the Seattle meeting is that many parents are afraid.  I stood up and told about our journey with this disease; others stood and shared their similar stories of grief.  Still others spoke out against vaccines, questioning their doctors’ advice and the CDC’s recommendation.  They are not convinced.

I respect their sincerity and their right to choose.  Yes, vaccination does carry some slight risk, but to deny our children the protection it provides is foolish.  Parents who have concerns should educate themselves, evaluate the benefits and risks and make the right decision:  vaccinate!

 

Lori Buher is a board member of the National Meningitis Association.  Find out more about NMA by visiting http://nmaus.org.

Taken Too Quickly: A Father’s Story

11 Jul

The other day a father who had lost his 19 year old son to bacterial meningitis called me to share his story.  The father’s pain was so raw, as it had just been four weeks since his perfectly healthy son died. This young man who died was a college student, worked as a manager of a donut shop, and volunteered with special education kids. He just had his braces taken off on a Monday, felt sick on Tuesday, went to the doctor on Wednesday, who sent him directly to the ER, where he died four hours later.  No time for goodbyes, no time to make sense of what was happening.

I hear too many of these stories.  Was the young man vaccinated?  No. Did the parents know about vaccination?  No.  I heard the pain and disbelief in the father’s voice.  In the four weeks since his son had passed away, the father has done extensive research on meningococcal disease, trying to understand this disease that swooped down out of nowhere to steal his son’s life. Yet still, he had so many questions.  How could this happen, and how did it happen so fast?

I don’t have the answers to his questions.  I only know that his son should have been vaccinated, and that everyone involved – health care providers, parents, schools, legislators – all of us need to do a better job to make sure this does not keep happening.

How many of our children need to die before every adolescent and young adult is routinely vaccinated against this disease?