Tuesday, January 27, 2015

Why your kid's sniffles make me sweat

By Jennifer Philp Zakic

I have a confession: whenever I enter a new place, I scan the room for signs of infection. I look for runny noses, speculate about whether the cough I hear is a “real” cough, and ask people “Do you currently have, or are you getting over, a respiratory virus?”

When I walk into a grocery store, I cringe at the thought of using a cart. I have learned to take Lysol wipes with me everywhere, and this eases my concerns, albeit ever so slightly. I always have a bottle of hand sanitizer near me, and I put it on about every seven minutes when I’m outside the home. I feel explosions of relief in the pit of my throat whenever a friend cancels on me because they suspect a cold is coming on. I rarely go to parties anymore. If I do, I’m the weird girl in the corner who only talks to people she’s known for at least 10 years.

By nature, I’m not a paranoid person. I’m not even a shy person. I have no definitive phobias toward germs. In fact, I’m usually the one who pulls the mystery food out of the fridge at work.

I am simply trying to protect my son, Branko (above right, with sister Nina). His last respiratory infection occurred in August, and it was, not to sound technical, a real doozy. His lungs were so full of junk that he was intubated for a week. It would be really wonderful to never have that happen again.

Our son, Branko, has a complicated medical history. Depending on your proximity to the world of special-needs parenting, his condition would either scare the pants off you, or not shock you in the slightest. He has skeletal dysplasia, caused by a chromosome 12 microdeletion, which affects pretty much every bone in his body. However, the only life-threatening aspect of this condition relates to how his ribs have grown. Funny. They have grown very funny. And small.

To sum it up in the simplest of terms: small ribs = small lungs. The actual cells and alveoli function beautifully but those pesky, funny ribs are restricting the movement of the lungs. As a result, he has spent an extraordinary amount of time in an ICU bed. He has had two unplanned intubations. Oh yeah, almost forgot, his heart stopped for five minutes one time because he had a Rhinovirus, aka The Common Cold.

For strangers or people I haven’t seen in a while, attempting to condense the summary I’ve just given is hard. It’s hard to accurately convey the severity of his situation. I either provide way too much detail—and watch as my listener’s eyes glaze over—or I don’t give enough, and I look like an overbearing and paranoid parent. I would hate to think that people assume I’m avoiding germs just to escape the inconvenience of a runny nose and a lost night of sleep.

Since his last respiratory infection in August, we've kept Branko in quarantine. He just had his first playdate in five months. He rarely sees other children now, and when he does, it will be a one-on-one playdate. It was a difficult decision to make, because he has always had some degree of social anxiety. I feel incredibly guilty for adding fuel to that fire.

At first, we tried to keep going on with our lives as if everything was normal, but this attitude led to some tricky situations. At the park, a friend’s sick child excitedly ran up to Branko’s stroller to say hello. At a birthday party, a friend-of-a-friend casually mentioned that her daughter, who was sitting right beside Branko, had been sick for three weeks.

We quickly realized that most parents have no problem sending their children out into the world with a cold. In an effort to kill hundreds of birds with one stone, we used social media to tell our story. It only took one Facebook post to make people understand that yes, we might run away from you if we see you at the store, and no, it wasn’t anything you did. And it worked. I realized that the people in our lives—friends, acquaintances, friends from former lives—were all really wonderful people. Now they understood. They hadn’t been through it themselves, but they got it.

There are a lot of things we don’t do anymore. We don’t go to birthday parties. We don’t go to the museum. My husband and I avoid crowded places, especially with people who aren’t aware of our situation. And did I mention the hand sanitizer? I own plenty of hand sanitizer.

But Branko still does so much. We have turned his weekly hospital appointments into an adventure. It’s not just a car any more, it’s a safari ride blasting all of his favourite songs. As an exclusive treat, we let him use the iPad in the waiting room, and I’ll admit, those days usually end with a trip to the toy store.

And sometimes, one of us will take him shopping so that the other parent can simply have some peace and quiet. We take him to larger, open, less crowded stores with the idea that fewer people and more space might reduce our proximity to viruses. We keep him busy at home. We reach out to other people when things get tough. We understand the importance of having time to ourselves, without our children. We complain. Some days are darker than others. There are days when I have no idea how long the TV has been on, and other days where I don’t turn it on at all.

Some days, I am swimming in fear. I try not to get angry when we visit the hospital for Branko’s monthly RSV vaccination. It’s in a very unfortunate location, right next to the children’s walk-in clinic. I try not to be angry with the parent who lets her sick toddler run up to our stroller—the blue one with the sickly looking boy attached to a portable oxygen machine. I try to keep my cool, but it’s really hard.

This past weekend, Branko’s dad took him to his first playdate since August, with one of our oldest and dearest friends. For the first 30 minutes, Branko had a meltdown. He clutched onto his dad’s neck and begged to go home. His little friend was determined to snap him out of it, hiding and reappearing from underneath the furniture. After a few minutes, Branko was laughing. My husband sent me a picture of the two boys playing together on the floor. I exhaled deeply when I saw the picture: this was Branko, being just fine, in a non-quarantined world. I saw a glimpse at our possible future.

We have a difficult decision to make, and that’s when to lift our quarantine, since Branko is eligible to attend Kindergarten in the fall. I often wish that parents of medically fragile kids could look into a crystal ball, or at least have the superpower to see viruses with the naked eye. Until this is possible, I guess I will continue to be the weird girl at the party, scanning the room for runny noses and speaking to a scant handful of people. Please don’t be offended.

Please follow Jennifer Philp Zakic on her blog
Branko Has Funny Bones.


I have a friend who has a medically fragile young daughter. They too, struggle with any viruses and other germs floating around. DO NOT get her started on people who refuse to vaccinate their kids! Anyway, when the time came for kindergarten, the school provided a robot that streams the classroom to their home. It was relatively easy to set up, their daughter has become friends with the kids in the classroom, she works along with other kids, even on group projects, and has even visited the classroom (under special conditions). She's in 1st grade now and doing great in school. Best wishes to you and your family- Lisa Butler, Huron, OH

That's a great idea! I'm going to look into this.

For different reasons, we had the same experience with our daughter when she was a baby. Normal colds sent her to the hospital for days -- not intubated, thankfully, but still hospitalized. I totally understand the fear of something other people don't have to fear. Last spring, we were trying to avoid getting that same daughter (by then, 8 years old) infected with her older sister's cold before she had to go in for cardiac surgery, and one thing that worked really well was Grapefruit Seed Extract. It is homeopathic, so check with your doctor, but it's just ten drops in a cup of whatever juice you like. Our older daughter was a MESS with that cold, and the rest of us avoided it completely. I think it made a huge difference! Maybe it would help your family, too.

I shared this with my friends. Such an important topic to discuss during the flu season.