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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

I’ve given factor in the back of a moving car, at the beach while on vacation, and even in a tent while camping.  When most parents start learning to give factor, they learn at their kitchen table, or at the Hemophilia Treatment Center (HTC).  Like most parents, a nurse began giving my son his factor at our kitchen table when he began prophylaxis ten years ago. For the first five years we did prophy, I don’t think we ever deviated from infusing at the kitchen table.  I suspect every family has their chosen spot to give factor.  

Eventually, there comes a time when the kitchen table or your normal factor spot isn’t available and you have to make a change.  I remember the first time I had to give Marques factor in the back of the car; we were driving to Philadelphia and he was still healing from a bleed after a fall. I wanted to stick to the doctor’s orders of infusing every couple hours.  I thought ahead and kept his port accessed so it was just a matter of keeping the saline, factor and heparin sterile, to prevent us from having to stop

It’s amazing how you go from getting the diagnosis of hemophilia and worrying about how restricted life may be, to going on vacation and just taking a minute to give factor and go on about your day. Lovee_Moms Blog

We recently took our first family camping trip.  It was a four-day/ three-night trip and we had a prophy treatment coming up, so I brought a factor dose for that, plus extra doses for both boys, in case of any accidents.  Unfortunately, before I could give the scheduled prophy dose to my oldest son Marques, he sat on an un-sturdy bench that was on gravel rock.  The bench flipped and he hit his shin on the bench next to him.  Of course this happens on the day when his factor level is at its lowest point and he ends up with a bruise on his shin. While I was concerned about certain camping activities, sitting in a chair was not one of my worries …but things happen.  We applied ice and gave both boys their scheduled factor dose before my youngest son could also have an accident! I administered factor in a tent, in the woods! As we were administering factor – in a tent, in the woods – the moment did not go unnoticed.  We definitely were not at the kitchen table this time.”  Marques rested his leg and he was able to go on our hayride later that night, luckily enough.

When I talk to new moms they are, understandably, very worried about their child.  In the early stages, it’s very hard to think beyond all the things he or she can’t do or that the family can’t do, rather than being grateful for all the things you can do.  Yes, having hemophilia can be a real bummer.  In the beginning, when they are little and you can’t infuse them yourself, it is hard and it makes the prospect of a vacation seem unthinkable.  However, once you get the hang of how to manage the care for your child, there is nothing stopping your family from doing whatever and going wherever for as long as you want.  I guarantee that you will be surprised, and often impressed with how you quickly adapt to the situation and how comfortable it becomes to infuse factor in unusual places!

Lovee’ lives in South Carolina with her husband, Charles, and her children, MaRee’ (15), Marques (11), Laithan and Layla (4.)


*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

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