It was Nana’s 75th birthday party and it was a big deal. Rose had just turned 2 and she was making her debut in the extended family as the first-born great grandchild. It was a bit of a trek to the catering hall in Queens from our home on Long Island.
We packed toys, games, wipes and other toddler necessities. But we didn’t pack the factor. I rationalized that it was safe and I could keep an eye on Rose, that she wouldn’t get hurt and we’d pretend hemophilia didn’t exist, just for the duration of Nana’s party.
Hemophilia had other plans.
Nana’s party was complete with a DJ and an inviting dance floor. Rose had played all the games we packed, tried all the new foods and she was ready to dance. And it was so much fun! Rose danced and twirled, and we were all having a blast until in supreme toddler fashion—boom! Rose slipped and hit her head on the unforgiving wooden dance floor. A wave of panic swept through me: How could we leave Nana’s party? We whisked Rose away, trying to slip away unnoticed. We called my in-laws who met us at the local hospital with factor to infuse Rose.
So, Dance Floor meets Toddler’s Head is an obvious Infuse Moment. What about for those less obvious times, those “Should we infuse for this” moments? These moments often come right before the bus is coming or at midnight, or at any other time in the day where you just don’t have the time or energy to infuse. I cannot emphasize this enough: If you are asking yourself whether to infuse your child for an injury or even for a "feeling," do it.
If in doubt, infuse.
Infuse when your child comes home from a concert and has a forearm bleed from excessive clapping, infuse when a spirited game of foozball has triggered an elbow bleed and infuse for that "off" feeling in your child’s hip, where if left untreated it could turn into a full-fledged and debilitating hip bleed. Even if your child is on prophylaxis he or she can have breakthrough bleeds, so it is important not to brush off any symptoms of a bleed.
As Rose got older, we infused smarter. Even on prophylaxis we would change the days to protect her when her activity level was higher. Some not-so-obvious times to infuse: before a sleepover, before a major holiday and even, yes, a birthday infusion. And always bring factor and supplies if you are heading more than an hour away from home. With a proactive approach, you and your child will be able to hit the dance floor at Nana’s party. And stay the whole time.
Be safe, have fun.
Shari Bender has served on numerous National Hemophilia Foundation committees, including First Step for new families and Victory for Women. She cofounded the New York City Hemophilia Chapter and served as its first president. Shari and her husband Stephen remain active and helped raise more than $1.5 million to support the bleeding disorders community. This article is part of a 4-part series Shari is currently writing, "Parenting Tips to Help Raise a Happy, Healthy, and Successful Child with a Bleeding Disorder." Subscribe to NHF Notes to follow this 4-part series.
The ideas expressed in this article are the author’s opinion and should not be, in any way, taken as medical advice. You should consult your own doctor if you need any specific advice about treating your bleeding disorder.