I am so appreciative to Shasta Kearns Moore for giving a voice to parents of medically fragile children. I am one of those parents.
My daughter was born with Congenital Diaphragmatic Hernia. That means her lungs were compromised during development and she spent 30 days on a ventilator during her first month of life. We were so careful the first three years of her life that we basically quarantined at COVID-19 lockdown levels.
I have started a foundation and support group, the Ladybug CDH Foundation, to help other CDH families with the medical costs and other finical hardships that come with this disease. As the school year starts, medically fragile children need more than just our small group of supporters to help protect their health.
It has been more than a little concerning to think about COVID and respiratory syncytial virus (RSV) when both can be deadly to children. That is why it saddens me to see so much division and anger over the simplest of precautionary measures, like mask wearing, that can help save the lives of vulnerable children like my daughter.
It feels like there has never been a riskier time for children to attend school. In addition to COVID-19, there have been serious spikes of the respiratory syncytial virus throughout the country that have been filling pediatric ICU beds. RSV can kill more than 500 American children every year and has taken many CDH survivors, including ones we have known.
An RSV prevention product exists, but it only offers protection for a single month and can require multiple injections. Our daughter was approved for this her first year of life (after a little back-and-forth from the pediatrician). But then her second year, insurance decided she was "too healthy" and would not cover the injection. I am encouraged that there are two new, highly promising RSV vaccines going through the approval process that will be more effective and I hope CDC makes them part of their recommended vaccination schedule so children, particularly vulnerable children, can be protected.
It may be a lot to hope for, but I hope our leaders will also encourage widespread adoption of the COVID-19 vaccine when it is approved for children. Even though my daughter is doing great at age 11, COVID poses a serious risk to her life. As soon as the vaccine is available for my daughter, we will be the first in line because her doctors recommend it. My heart is heavy with all the division and anger and politics over a public health issue. Living with CDH always means that an emergency surgery may be around the corner at any time. Scar tissue from prior surgeries cause adhesions that can cause bowel obstructions.
I try not to spend too much time thinking about full ICUs and ERs. I pray none of us needs them anytime soon.
I hope stories like mine and Shasta's, parents to children who cannot catch anything, will convince those who may be skeptical of masks or vaccines to please take steps to protect your neighbors against diseases like RSV and COVID.
This is not about politics, and has everything to do with loving your neighbor.
Liz Dooley and her family live in Southwest Portland.
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