H1N1 and other fears: the complexity of making serious medical decision for our disabled children

Wednesday, August 26th, 2009 | Caregivers and providers, Medical complications of the developmentally disabled, Vaccines and Vaccine Injuries

Vaccines are my thing…I think most of my readers know this by now. It is what brought me into the world of disability. God (if there is one) gave me a healthy, perfect daughter. It was a man-made whole cell pertussis vaccine that took her from me and led me down the path I walk today. It was my choice as Quincy’s mother to vaccinate her…to do what I thought was best. It turned out to be a bad decision. I no longer take any decision regarding my children’s health lightly. I have learned the hard way that if there is a risk, and there is always a risk, then that risk can become reality in an instant.

Today we face the amped up threat of H1N1 influenza. We have the CDC and the federal government using intense pressure to have us vaccinate ourselves and our children. There are many theories out there about all this. Here are some facts to ponder: The federal government has spent nearly $2 billion dollars to purchase vaccines from pharmaceutical companies. The vaccines began clinical trials two short weeks ago…when they are offered to the public they will be virtually untested and will have a questionable safety profile. Insurance companies have joined with the federal government in the vaccination campaign. Insurance companies do not make money when they have to pay claims for doctor visits, medication and hospital bills. The H1N1 virus is mild at this point in time, but it does take a stronger hold on those with underlying medical conditions.

So, as parents of children who are medically fragile we must face this threat and make our own decisions. Do we use a vaccine that hasn’t been thoroughly tested? Quincy was given a vaccine that had been on the market for almost two decades and still suffered tragic consequences. Do we refuse the vaccine and risk our children getting ill? Who do we believe?

My advice is this…do your homework and educate yourself as much as you can. One thing you can do is watch what is occurring in the southern hemisphere where it is winter (the flu virus thrives in cold weather, which is why it was mostly dormant in the summer) and see what is being reported. In the age of the Internet it is quite simple to read newspapers from all over the world. Watch the trends in your community. Talk to a doctor or health care professional that you trust. Many health care professionals are voicing concerns about using an untested vaccine and you may be surprised at their advice. Purchase lots of hand soap, Purell and Kleenex and teach your children the importance of washing their hands and avoiding the germs of others as much as possible..

Parents shoulder the burden of their children’s health care decisions and it is an enormous responsibility. You must understand that we do the best we can. You have to forgive yourself if your choice leads to a result that you didn’t expect. We don’t always win. Quincy is living proof of that.

Tags: CDC, H1N1, influenza, swine flu, vaccines