To the People Who Think I Go 'Overboard' to Protect My 'Medically Fragile' Child

“It’s just a little cold.”

“I washed my hands before I left the house.”

“What are germs among family?’

These are phrases I have heard many times when it comes to my daughter. Well-meaning people try to explain their way out of taking precautions for her health, but it puts her in a dangerous situation. My daughter was born with an extremely rare syndrome that causes major respiratory concerns. Her immune system is very weakened, so she is susceptible to many of the germs that float around this time of year. While we can’t keep her in a bubble, we do try to be very careful about exposing her to unnecessary germs.

You may know the family of a “medically fragile” child. Maybe you feel like they go a little overboard with the germ precautions. You have the right to think that, but let me try to help you understand a little more.

Five years ago, in my own living room, I feared I was watching my baby girl die as she first went into sudden respiratory distress, then stopped breathing altogether. We had been trained extensively in caring for her as an infant with a tracheostomy and a ventilator, but nothing was working. The paramedics bagged her as we rode to our local hospital, where they discovered she had respiratory syncytial virus (RSV), an infection of the lungs and airways. She was then medevac-ed to the hospital where she sees all of her specialists and was admitted to the pediatric intensive care unit (PICU). After several days of struggling to breathe, my daughter started to improve and was finally able to come home. We have had several close calls since then, and I can say without a doubt that it never gets easier.

You see, for otherwise healthy children and adults, RSV is just a cold. You have a runny nose, cough and sniffles for a week or so, and then you get better. No big deal, right? But those cold symptoms can manifest into something potentially deadly for “medically fragile” children whose immune systems can’t fight it. This is why so many families of kids like mine go “overboard.” It’s not because we are ridiculous; it’s because we know the dangers of these seemingly minor illnesses. Your little cold could be my daughter’s PICU stay. It’s my reality.

We take many precautions to keep our daughter healthy, including keeping her out of school and church when there are lots of germs floating around. But we can only do so much to protect her!

So what can you do to help keep “medically fragile” children healthy? Here are some tips:

Avoid visiting if you are sick.

I hate being put in the very awkward situation of asking someone to leave because he or she is showing signs of illness. If you aren’t sure if you are well enough to visit, call and ask. I so appreciate when people give us a heads up and let us decide. If you must be in close contact with a “medically fragile” child while you are ill, offer to wear a mask. 

Wash your hands often when around a “medically fragile” child. 

We have hand sanitizer dispensers mounted on our wall just inside the door, so people get some upon entering. This doesn’t replace hand washing, but we have found that too many greetings happen between the door and the bathroom.

Get a flu shot and make sure children are up-to-date on their immunizations. 

This is a big one for us. While we understand that people have a choice whether or not to vaccinate and this is a big topic of debate around the country, we feel strongly that people who are in close contact with our daughter should be fully vaccinated — including the yearly flu vaccine. We keep our house a “safe zone” and ask that anyone who visits has had the flu shot.

My daughter gets the flu vaccine every year, but we also rely on herd immunity to protect her weakened immune system.

Two years ago, she still contracted the flu (in April, when we thought we could finally let our guard down!) and was in the ER twice. While we know there is always a chance she could catch something at school, we keep our house as germ-free as possible.

Remove your shoes upon entering the house.

Lots of germs live on the bottoms of shoes and make their way into the carpet. Removing shoes is especially important if there is a baby in the home.

Avoid sharing food and drinks with a “medically fragile” child.

Eating and drinking after each other should especially be avoided with kids with weakened immune systems. Even if you feel you are healthy, it just isn’t a good idea.

Call if you come down with an illness after visiting.

Sometimes, people start showing signs of illness after we have been with them. We understand that, but we are so grateful when they let us know! This way, we can keep a close eye on our daughter and treat symptoms immediately before they get worse. I don’t think anyone will regret having had a heads up!

So the next time you think someone is going overboard regarding the health of his or her “medically fragile” child, ask yourself what lengths you would go to to protect your own child?

Parents of “medically fragile” children, what else can you add to this list? What precautions do you hope people take around your child?

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