Most 15 year old girls are more interested in boys or music than how deep their science high school coursework is. And while I was also interested in boys and music, I remember asking my dad for a more challenging high school science course when I was 15. My dad, who has a degree in genetics, had given me a pretty decent science background up to that point, but he did as I asked and assigned the Human Genome Project for me to read, discuss, write papers on, and research. That started a lifelong love of medical research, and more broadly, medicine.

I have three children, and my youngest, Mac, was born with a rare form of spina bifida called myelomeningocele with shunted hydrocephalus. Amongst other things he is paraplegic, has a tracheostomy, and needs to use a ventilator to breathe at night.

Mac is my miracle child; my smart and vivacious little boy. He was not expected to see his first birthday, but like the courageous child he is, he has seen three. He’s the jokester of the family and he’s one of the most expressive nonverbal children you will ever meet.

We live about six hours away from the Disneyland theme park in Anaheim, California. When I first heard of the measles outbreak stemming from the park, I was on high alert. Because we live so close to the center of the outbreak, I knew it was only a matter of time before the outbreak spread to our community.  So when I got the news release from our local public health office on January 28th that there was a confirmed case in our county, our life was upended.

According to news reports, this is how the measles came to my community: An unvaccinated adult contracted the disease while in another part of California and then came to Fresno County and visited the area’s largest mall, including the Disney Store and Build-a-Bear, places I often visit with my kids.  The infected individual also visited the labor and delivery ward at one of our local hospitals.

Our pediatrician advised us to stay home from ALL unnecessary gatherings (necessary being only life/death situations) until the measles is cleared from our county. No church, birthday parties, playgrounds, malls, grocery store trips as a family, weddings, after school activities or fast food restaurants.  We’ve even had to keep Mac home from the preschool that he loves for the last two and a half months.

My older two children are fully vaccinated for their ages. However, because Mac was medically frail for so long, our pediatrician declined to vaccinate him at various times during his first year–including against MMR–until he was strong enough. As he’s become stronger we’ve been able to catch him up on a few shots but his immune system has difficulty building appropriate levels of the antibodies needed for immunity. As a result, he is much more susceptible to the disease even though he’s vaccinated.

The common cold or flu are major medical events in our home and the measles is life and death.  For those in my community and elsewhere that have refused vaccinations due to personal beliefs, and not because of sound medical advice, this is what I want you to know:

  1. Mac is a child and we chose life for him when we were told about the seriousness of his medical conditions before he was born.  I want to choose life for him now but that choice has been taken away from me.  For Mac, the measles are literally life and death.
  2. I understand you have concerns about vaccinating, but choosing fear instead of information has severe effects for kids like Mac and those that are fighting other serious illnesses such as cancer.
  3. Even if our family makes it through the outbreak unscathed, your choice not to vaccinate has isolated my family and taken activities away from my children that they enjoy.
  4. One of our family rules is to think of others first.  My two older children were vaccinated on schedule because I wanted to protect them, and others, from serious illness. My family is relying on you to do the same.
  5. I would not ask you to do anything for your children that I would not do myself.  Once the outbreak has subsided and he is strong enough, Mac will receive his MMR vaccination.  I only ask that if your child is old enough and strong enough that they also receive their shots on schedule.

All in all, the risk of measles for my family is literally the loss of my vibrant little boy. His medical conditions make him one of the few fragile children whose protection by herd immunity is of paramount importance. If herd immunity breaks down, he is in the topmost percentage of at-risk children for severe complications and death from even a minor case of the measles.  This is where my heart is: society needs to be aware of children like Mac, and just how much they depend on you.

 


Resources:
Spina Bifida Association. Hydrocephalus and Shunts in the Person with Spina Bifida. Retrieved February 10, 2015.

Centers for Disease Control and Prevention. Health Alert Network Advisory: U.S. Multi-state Measles Outbreak, December 2014-January 2015. January 23, 2015. Retrieved February 10, 2015. CDCHAN-00376.

County of Fresno Public Health Department. Measles Case Confirmed in Fresno County. Retrieved February 10, 2015.

Centers for Disease Control and Prevention. Vaccines and Immunizations: Possible Side Effects from Vaccines > MMR. Updated August 19, 2014. Retrieved February 10, 2015.

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Categories: Chronic Illnesses + Conditions, Disability + Disability Advocacy, Infectious Disease + Vaccines, Policy, Politics, + Pop Health