My 2 year-old son, Gideon, has been sick since the day he was born. First, it was weight gain, or lack there of. We discussed a feeding tube, but at the time it seemed so daunting. Little did we know that this feeding problem would portend health problems that would make tube feeding seem like child’s-play.
At around 4 months of age, Gideon began having seizures. The same week, he woke up one morning, he woke up having lost ALL his milestones. Within one week, my sweet baby had gone from a skinny but thriving 4 month old to a blind and deaf helpless creature whose body was over run by seizures.
We were quickly admitted to the hospital where Gideon was diagnosed with West Syndrome, a form of infant onset epilepsy known in the literature as the “Catastrophic Diagnosis” due to the high percentage of children who end up with life long disabilities. The first line of defense to West Syndrome, also known as Infantile Spasms is a high dose course of steroids.
Our doctor was very clear-the steroids would destroy his immune system. “You must be careful!” she said in her powerful Italian accent. “Don’t take him anywhere! No restaurants, no movies, no stores, no play dates AND no vaccines for the next 6 months!”. I was terrified of the diagnosis and the thought of him being out in a community with some of the lowest vaccination rates in the nation.
During the course of the steroids, my daughter’s teacher had to come to the street to pick her up and drop her off because I couldn’t bring my son into the classroom. She was stripped and scrubbed to the skin and changed before coming back into the house after school. We all washed our hands until our skin cracked. I relied on others to do my grocery shopping and other chores.
Gideon survived the course of steroids without further illness, but the steroids did not cure him of his epilepsy. Since his initial diagnosis, we have spent over 100 nights in the hospital, each night the heartbreaking ritual of a family unwillingly living apart. Advocating for my children as we navigate medical care and all the governmental and private agencies involved is a full time job that I must get done in addition to being their Stay at Home Mom.
And Gideon, though off the steroids, is still medically fragile. He recently contracted a mild flu. For Gideon, it was a formidable illness. Due to his cerebral palsy, he began gagging on his secretions causing him to vomit so frequently that he became dangerously dehydrated and lost 3 pounds in one week. He also presented with neurological symptoms similar to what he had the last time his epilepsy got out of control. We rushed him to the Emergency Room and he spent over a week in the hospital recovering.
In the world of the medically fragile, Gideon has it pretty good. He is not completely homebound, he is allowed to touch his sister, unlike the kids in the transplant ward. These precious children are suffering and struggling just to stay alive and their families are under relentless stress just to manage the requirements of day-to-day life. Here in CA, we now also live in fear of our children contracting one of the vaccine preventable illnesses that plagued generations past. This is simply unacceptable.
In order to keep these children alive, it is essential that we restore herd immunity to vaccine preventable illnesses. To vaccinate a child attending school is no more a matter of personal choice than to drive drunk on a public road and I am filled with the same rage towards those who choose not to vaccinate as I do towards those who put innocents at risk by driving drunk. But rage gets me nowhere and its time for action. This is why am working on SB277. I love this bill because it DOES NOT take a way a parents right to make their own choices about vaccination. It simply states that if a family chooses not to vaccinate they must find alternative methods of schooling their children.
Although I still personally question why anyone would choose not to vaccinate given the clear scientific benefits, I must admit that to force such an action would be unconstitutional. It is essential though, that we ask anyone who makes that choice to keep their children isolated from those who are vulnerable to these terrifying illnesses. We can only thrive as a society if we think not just about ourselves but about our community at large. I urge you to call your Senator and ask him or her to vote yes on SB277. It is medically, ethically, and legally a perfect solution to a public health crisis.