Musings of a Marfan Mom

To Sport Or Not to Sport: Balancing Life with Restrictions

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One of the most difficult parts about having Marfan syndrome or a related disorder is figuring out how to manage activity restrictions. Affected youth (and some adults!) see themselves as invincible. Parents may be inclined to place their children in a bubble for that reason, though some others opt to ignore doctors’ recommendations entirely. Neither is a healthy approach.

The Marfan Foundation has a handout on activity restrictions. It discusses the basics: non-competitive, non-isometric activities, keeping heart rate low, no collision sports. Serious weight-lifting isn’t advised, nor basketball, or football.

But what about all the activities that are somewhere in the middle? And what if your/your child’s aorta isn’t yet enlarged? Do you take the preventative approach and observe all activity restrictions, in the hopes of slowing down aortic enlargement? Or do you decide to let your child fully participate until they absolutely have to stop, even if that might speed up when surgery occurs? We only have one life, so it’s not as if we can try both routes and see which is best in the long run…we have to make the most thoughtful decision we can and hope for the best.

I was diagnosed at 8 and was already enjoying horseback riding and basketball. I had to give up both. My mother would argue that she and my father took a balanced approach to activities…I might remember Mom in particular as being more of a bubble person (love you, Mom!). Naturally, growing up I told myself that I would parent MY kids differently, if they had Marfan. I would let them do way more than I had been allowed to!

But then I grew up, learned a lot more, watched too many friends die too young, and had kids – one of whom has Marfan. I thought maybe I’d get lucky and J would be completely uninterested in sports. I mean, his mom is a freelance writer, and his dad was nationally ranked in Starcraft2 for a short time. What I’m saying is, the athletic blood does not run through our veins. Except, of course, in J’s. He wants to play all the contact sports. Jumping off furniture? Why not? Knee-high AFOs don’t slow him down.

J has watched his brother play sports, and begged from a young age to be included. I’ve been torn. I know the very real pain of having to give up a beloved activity. But, sometimes you don’t miss what you’ve never had (case in point: due to a stomach surgery I’ve never been able to have soda pop, and that doesn’t bother me). At the same time, if you’re too restrictive, kids can rebel, which can be dangerous. I used to sneak into gym class and participate in all kinds of things that weren’t good ideas.

And so we talk. He’s only 5 but he understands a lot more than you might think. He’s been keeping track of his medications for awhile now (what he takes, for which body system, and when he needs to take it). He self-advocates with doctors. He understands, on a very basic level, why he can’t do certain activities. When the Menininho was playing t-ball last year, we agreed to let J try out his preschool playgroup’s t-ball program. It was perfect! None of the kids had any idea what they were doing. It couldn’t have been less competitive or dangerous. So, in the fall, we allowed him to play soccer in that league. J understands that he is only allowed to play soccer until he graduates the preschool program. I like that there is a clean cutoff. Easier for him to understand, and early enough that he’s not terribly invested in it yet.

This summer, we’ve decided, in conjunction with J’s cardiologist, to let him play t-ball in the regular community league. The nice thing about having an older brother without Marfan is that we’ve been able to test out the leagues first. That’s how we know that even at 5 we would not be comfortable with J playing rec soccer, but t-ball is low key. We haven’t determined whether his cutoff will be the end of t-ball, or the end of coach-pitch. We’ll see how the latter goes for the Menininho this summer.

I don’t know if this is the right answer. My Marf Mom gut says that stopping risky sports before middle school will be easiest, but who knows what J will tell his future therapist? I think that’s just how parenthood goes in general though….muddying through, making the best decisions we can with the information we have, apologizing as needed, and trying to do better.

How do you make decisions about your/your child’s activities?

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4 Comments

  1. That’s a really tough one for me too. I have an 8 yr old extremely active son, who I have passed on the Marfan gene to. He is involved in many sports that are non-contact—-as much as possible….basketball, soccer, baseball, and he loved them all. I want for him to lead a “normal” life, although I know this is not the case. I just hope he is not totally heartbroken once we need to tell him no….that time is not now, so I’m glad we get to still enjoy watching him thrive and love playing.

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  2. My son was diagnosed when he was 6 ½ (as was my wife at the same time). He is 13 ½ now. Our daughter (who is 10) does not have the gene. We learned after my brother-in-law passed away from undiagnosed Marfan at 37.

    From early on, my wife and I took the approach that we had to link the physical and emotional health together. We can’t just think about that moment. We have to think about the long-term and how to prepare him for becoming an adult, and especially for the more difficult teenage years. Self-confidence in himself is key. If he doesn’t build self-confidence, he’s behind the eight ball long term in dealing with his health. The only way for him to learn to deal with the condition is to deal with the condition. That means getting him involved in making the decisions as soon as possible. We work closely with his cardiologist, eye doctor and his geneticist to make sure that we know what he’s got, the implications of it, and what activities are not a good for him.

    When he was 7 ½, he had some problems adjusting. We were all trying to adjust to it. I knew we had to put it in context for him. I sat down with him and drew a circle on a piece of paper. I told him that the circle represented all of the things that any person could do with their lives. Next, I drew a radius from the edge of the circle to the center. I told him that that thin line represented the activities that it probably wasn’t good for him to do: push-ups, pull-ups, competitive sports, etc. I told him that the line represented the things we needed to be aware of, but to try not to obsess about because if we obsessed about it and didn’t focus on the rest of the circle that has so many more possibilities, the only thing he’d do is make that thin line into a huge wedge. I said we would talk about it as time went on, but he would have to make these decisions about his activities and his health as he got older. If we don’t let him make those decisions, it would be harder for him to do it down the line.

    We talk with the PE teachers every year and I have an e-mail that we’ve developed over the years that tell them about the condition and some of the restrictions that go along with it. We tell them that our son is aware of the condition and we trust him to make the decisions on what activities he takes part in. If the teacher has any questions, we suggest that they talk about it and see what alternatives are available. He plays flag football in class, but he only plays quarterback. He knows not to go all out on any sport. We also have an e-mail for his other teachers where we explain the condition and tell them that it shouldn’t be a concern in a normal classroom, except for the dislocated lenses, as long as they don’t make him change a tire in class. We think it’s important to show a measure of calm about it because if we’re nervous about it, his teachers and he will be nervous about it.

    We know that if we bubble wrap him, he’s going to rebel and that he will be better off if he takes some risks occasionally and we won’t get too upset about it. He plays soccer with a few friends (not on a team – team sports after age 10 are out because that’s when it really starts to get competitive) and even broke his arm doing it when he reached for the ball as goalie and a friend accidentally kicked his arm. He was calm about it as he waited for me and we walked the two blocks to the emergency room. He joined boy scouts and is now four merit badges and a project short of becoming Eagle. He is learning a lot from his Personal Fitness merit badge. He worked out the exercise regimen with his cardiologist and his geneticist. His geneticist, and Eagle Scout, is his merit badge counselor. His aorta and his lenses are stable. And he’s a pretty calm, level-headed kid who understands his condition, takes his medicine, and who we have to trust to eventually take care of himself.

    Bottom line, be calm, get the kid involved in it, and redirect as appropriate, but, most importantly, build self-confidence.

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  3. My son too has Marfan, he played all the rec games;soccer,tball,flag football, baseball, and basketball. Which was so hard when he couldn’t play rec anymore because of his age. Now in High School was ok to participate in high jump. He just has to know his limits. But once they start playing rec so hard when they reach the age they can’t play anymore. Really hard for my son, him not wanting kids going to adopt he says. Told him sports isn’t everything, you can have a normal life. My opinion don’t have them do rec till the age they can’t. Just maybe try it. But if the child loves that particular sport will lead to depression when he gets older. There’s music, art, drama, dance they can do.

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  4. Thank you, thank you, thank you @Jeff !!! This means a lot. God bless you and your family.

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