Tuesdays are Your Turn – Talking to a Child About Fatal Asthma

Last Friday Libby left a link to the following story in the comments:

Ickey Woods, who used to play for the Cincinnati Bengals, lost his 16 year-old son, Javonte, to asthma over the weekend. After varsity football practice on Wednesday morning, Javonte suffered what sounds like a severe attack that night and ended up on a ventilator. He passed away on Saturday with no evidence of brain activity.

Posts like this one are hard to write for the obvious reasons. The tragedy in the Woods family scares me, for one. Plus, this blog talks about life with an asthma kid, so I like to keep the focus on that living, not the nightmarish alternative I will probably always fear somewhat, deep in my secret heart.

And yet.

Avoiding the difficult subjects never helped anybody or made the frightening possibilities of asthma go away. The real reason I avoid them is that using another family’s devastating tragedy as a learning experience makes me uneasy. It feels disrespectful of their very real, very raw loss, and sympathy for that should always come first. The Woods family has mine.

I don’t know any more details about the story than I’ve written here. I don’t know if Javonte had intermittent, moderate, or severe asthma. I don’t know what meds or inhalers he used. I don’t know if heat and/or exhaustion from the practice played a role, or if football that morning was just a coincidence. In everything I’ve read, though, he sounds like a healthy, athletic teenager.

He sounds like he led a normal life, playing sports and having friends.
He sounds like my kid.
Which terrifies me the most.

This is my question:

Do you tell your child how asthma can sometimes be deadly? What do you say? What age did you start?

AG and I didn’t have this conversation until a year or so ago. I can’t remember what prompted the talk – probably something to do with future peer pressure and smoking – but how do you tell a child she has something that could, no matter how remote and unlikely the chance, end her life someday? I can barely even write the words, let alone say them out loud.

And yet: she needed to hear it from me. Shielding hard truths from children only works for so long and besides, I wanted to make sure she has accurate information. Knowing my child and her propensity to worry, I could picture her hearing or reading a story like this and automatically projecting the same outcome onto her own life. Really, that’s a natural reaction for anyone. The challenge lies in teaching children to respect the seriousness of their chronic health conditions and the importance of preventative care without instilling an unreasonable, paralyzing amount of fear in them.

Here’s what I told my daughter:

Asthma is extremely treatable for most people, and you’re one of them.

Many people live with asthma as only a minor annoyance, and we’re lucky enough that you’re one of those people, too.

Following your maintenance program is the single most important thing we can do to keep you healthy.

If you ever feel even the slightest symptoms of the mildest flare, treat them immediately. Every time.

As you get older and when you move away from home someday, I hope enjoy your life, explore new places, and have fun. But never forget your health.

Fatal asthma attacks are very rare. Very rare. I have a better chance of winning the lottery than you do of having such a serious flare.

That last sentence, I made up. It’s not like I keep these statistics in my head. Who knows? It may even be true, but I wanted both to emphasize the low probability and end the conversation on a positive note, and it worked. AG got distracted away from the fatal asthma talk and started making plans for that lottery money, should I ever win it.

How about you? Have you talked about this yet? Do you plan to?

25 responses to “Tuesdays are Your Turn – Talking to a Child About Fatal Asthma”

  1. Sara C. says:

    I haven’t actually said the words “asthma can make you die” to Mariella. She does know, however, that not every kid knows at what point they need to go to the emergency room, and that not everyone has trouble breathing much of the time. What I focus on right now is that Mariella and ONLY Mariella can be in charge of her lungs and her breathing. I can’t take her medicine for her, I can’t do her treatments properly for her…it doesn’t matter if her sister is making her laugh when she’s doing her nebs…not breathing properly isn’t going to get the medicine into her lungs.

    eventually, we’ll have this conversation. I’m not ready to bring it up. It’s enough that *I’M* scared of her dying in her sleep…I don’t need HER to be scared of it too…KWIM? She has proved herself responsible (at this point) of getting care and treatment if she needs it…and at this point, the only time she isn’t with ME or someone that I trust is at school…and I sort of trust THEM to keep her safe.

    Someday, though, she’s going to be in after school activities that don’t involve me, and she’ll have to be super diligent about taking charge of her own health.

  2. Sarah says:

    I don’t remember the stage at which I was told that an asthma attack can be fatal. It’s just one of those things that I’ve known as long as I can remember. I guess it’s because I had a couple very serious attacks as a little kid. I suspect (me being the nosy kid I was) I overheard mom telling my grandma about it at some point and asked her about it. But I don’t remember the conversation or how old I was when I learned about it.

  3. Amy says:

    Sara–Exactly – sounds like she’ll be close to the age AG was when we talked about it. And again, I can’t even remember how it came up, but she asked me what I meant by a “very serious attack,” and I took that as my cue that she was ready. Kind of like the other Big Talks you have to have with kids, this one seemed to work best when she was already questioning the issue (not that I have a comparison for approaching it any other way).

  4. Lesley says:

    I was faced with this question just yesterday, when I was having a conversation with my 6 year old son. He is having a mild flare, and I was trying to explain to him that he needs to be aware of how he feels and when he may need to use his inhaler, as the people at his camp don’t know him like I do and won’t just tell him he needs a treatment. I explained that asthma can get bad, and you want to address worsening symptoms as soon as you can. He just looked at me, uncharacteristically serious for a moment, and asked “how bad can it get?” “REALLY bad” was all I could reply. We have talked about people making bad choices which can lead to them getting hurt or even dying, but this seemed like the first time he was making a personal connection with the bigger picture of asthma. I didn’t want to downplay what can happen, because I too believe that will not serve kids well as they grow up, but at the same time I didn’t want to tell him he could die from this – not in those words, not yet – because at his age he can’t put any perspective to it. I believe (hope, pray) that providing him with the tools to recognize and be responsible for his asthma will also help him recognize that he is not helpless in this matter of life and, unfortunately, possibly death. My heart goes out to the Woods, who know the grief that we as asthma parents live in fear of and that no parent should ever know.

  5. Anne says:

    Another thing is that you want to keep the asthma as reversible as possible. I am not clear (at all!) at what point COPD rears its ugly head, but you can always point out that if you catch an asthma issue early, the flare won’t have so much an opportunity of getting worse.
    You can also point out that a lot of things are not so quickly reversible–broken arms, poison oak, flu, sprained ankles, appendicitis come to mind–and that there is a significant advantage to your body long run if you take immediate good care of it.

  6. Sara C. says:

    @Lesley…sending M off to camp this year was really really hard. As was sending her off to full day kindy was last year. No one else can look at her, and know she’s in trouble. There are times that she doesn’t complain, she just looks terrible, and is lethargic. (I sometimes wonder if those times the teacher is complaining that she’s unfocused and not paying attention…if she’s really just working hard to breathe) I’ve been sort of backing off with the jumping in and just telling her she needs a treatment or her rescue puffer, and more sort of nudging her to really pay attention. Most of the time she does pretty well…but there are times that she isn’t self aware. But, she’s six…and has spent the better part of her life short of breathe.

    Amy, I’m with you…I’m going to let her lead the conversation. Somehow, the right words seem to find their way when the time comes.

  7. Danielle says:

    My doctor took care of this for me and my mom. When it became clear to everyone that I had persistent asthma, she said “Now I’d like to share a little bit of asthma knowledge with you”

    She said “You may not have symptoms your whole life, and it’s certainly our goal to get your asthma under control. But you have to know that people still die from asthma. You have to stay on top of it even when it seems minor”

    My mom and I both said that we understood and that we’d keep seeing her for asthma maintenance. And that was that.

    Since then, my mom and I have talked about fatal asthma a few times, mostly when we’ve heard of someone passing away. My mom gets really sad though and so I reaallly try to avoid the topic. We both know that we know about it.

    The most alarming time she brought it up was when I was refusing to start oral steroids and basically wanted just wanted to stay in bed all day. She said “I GET that you hate steroids, but you have asthma and taking steroids at times like these is better than letting it escalate to the point of dying”. You can bet I took those steroids. I’m soo surprised she used the dying card to get me to take them though, she must have been spooked.

  8. Amy says:

    Sarah–It’s weird how AG’s asthma history has developed. Her most serious attacks occurred when she was too young to really grasp the significance of them. Since then, her worst was last fall, after The Talk.

    Lesley–Yeah, 6 is young. I’m lucky I never got the “How bad can it get?” question at that age-I would’ve answered the same way.

    Anne–Good points! In a way, I’m glad my daughter’s lived with this for as long as she can remember. She never had an adjustment period to the meds and peak flow and so forth since asthma’s always been a part of life.

    Sara–It’s interesting about kids’ perception and memories. You know, AG does not remember the worst flare of her life but she does remember the hospital visit it caused.

    Danielle–Yeah, I bet it was really hard for her to say. I’ve played the hospital card before, but not the fatal one. As in, “I know you hate using your inhaler all the time, but do you hate the hospital MORE?”

  9. Melissa Ann Moore says:

    Wow. That would be a hard conversation to have with your kid, but I really respect that you were honest but positive.

    I didn’t find out that I had asthma until I was an adult, as my parents don’t believe in illness. Unfortunately I have a lot of bad memories of not being able to breathe as a kid, and just thought it was normal. So it makes me happy that your kids know what it’s like to feel healthy, and more expect to feel that way. I think this helps, as sometimes what I think is normal is really skewed.

    So I had this conversation with my asthma doctor as an adult. I was glad we talked about it though. I think part of it is that so many people see asthma as this nusaince thing and don’t take it seriously, that this gives me the courage to advocate for myself when I know I need help if that makes sense.

  10. MC says:

    Talking about the fact that some condition you have could kill you some day isn’t an easy topic, and it gets avoided in my family. So when my dad (who knew he had a heart condition and had a pacemaker) had congestive heart failure and had cardiac arrest and I nearly had no dad, it hit me and my family hard. And still thinking back to that day 2 years ago is still hard even though I still have my dad alive. To realize that I could have died several times, especially from that injury 2 years ago I had, is really hard to grasp because I’m still alive. But it’s true (I’ve been told by several doctors I’m lucky to still be alive).

    To be reminded that whatever’s going on in my lungs whatever it is, asthma or not, could if it’s not resolved and controlled, that it could kill me… it’s a harsh reminder, but a important one. This topic has never come up with anyone in my family about my health. It may have come up between my parents while I was away at college, but I’ve never really brought up the topic, and it’s never really hit me that I could die from it some day, and it could be totally unexpected. Right now I don’t have to have this conversation with a child, and I can only imagine how hard it is… and for the parent who has to deal with that reality that their kid faces. I don’t like the idea of bringing up the topic with my mom, even less my dad, but that doesn’t mean it will absolutely not kill me some day without warning.

  11. Amy says:

    Melissa–Thank you! I made a lot of mistakes with her asthma when my daughter was very little (she’s 11 now), and I’ve been determined to do it right ever since. People don’t take asthma seriously, so I’m glad your dr. gave you that confidence to advocate.

    MC–I’m sorry your family isn’t comfortable talking about this sort of thing. As a parent, I can tell you it’s an extremely hard possibility to verbalize to your child. But since AG is only 11, she didn’t really have the awareness she needed, you know?

  12. AsthmaGramps says:

    As you may tell from my moniker here, I am related to AG. I just wanted to comment on this thread. There have been a number of times AG and sidekick stayed the night with my wife and I. Always enjoyable (after all, they aren’t ours!).
    Until they moved up here to the Denver area nearby us, we just didn’t get it (about the asthma). When they first got here, we were nervous about knowing exactly what to do in case AG had a flare when she stayed over.
    Now, however, she has gotten almost 2 years older and is much more mature and open about taking care of herself. We are impresssed with what Amy and (maybe) asthma dad have done with and for our grand dsaughter(s).

  13. Elisheva says:

    This is something I hate thinking about cuz it creeps me out. I don’t think I was ever talked to about this. Just kinda knew it was possible. The threat for me when I was a kid was of permanent lung damage. That if I didn’t take my asthma more seriously I may end up with permanent lung damage and then it wouldn’t be as easy to treat.

    Not to downplay the issue but I don’t really get why this us such an important thng to discuss. The chances of dying I asthma are so low that you probably have a better chance of getting killed while crossing the street. Yet no one sits down with their kid and has “the talk” about the possibility of dying from crossing the street. Just about the importance of road safety.

  14. Amy says:

    Um, yes they do.
    Parents teach their children about road safety by saying things like, “If you don’t look both ways before crossing the street, a car could run over you.”

    Issues like this are important to discuss because they need to come from a trusted, loving parent with accurate information–the same reason parents need to talk about the facts of life with kids before they hear about it on the playground. My child doesn’t need to read about a fatal asthma attack in the news someday and then wonder if it will happen to her, without me there to reassure her and explain that if she takes care of her health, she’ll be fine.

    Sure, the chances of a fatal attack are low, but hoping or assuming it won’t happen to your child isn’t a good enough reason not to discuss it.

    The odds of child abduction are probably even lower than those of a fatal attack. Most kids DON’T get kidnapped, but that doesn’t mean we don’t teach our kids about Stranger Danger.

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