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

As I have become more involved in the hemophilia community over the last few years, and read more stories online, it is evident that each person with hemophilia and the people caring for them have such different experiences with bleeds and treatments. When Chris was young, we were told Chris wasn’t your “typical” child with hemophilia, that he didn’t have the “typical” toddlerhood bleeds. But who is to say what “typical” or “normal” hemophilia looks like? No two kids are the same — each is unique. With that being said, there can be a huge learning curve for parents of a child with hemophilia. And with ever changing treatments, even adults with hemophilia are learning a new “normal.” We missed bleeds along the way and made mistakes, but we did learn what worked for Chris.

Chris is now 31-years-old. Looking back and reading over the journals I kept of his bleeds and infusions, I missed a lot of bleeds, or second-guessed things. Chris was diagnosed shortly after being born with severe hemophilia B. When he was 3 months old, he had his first bleed in his left mountain_typical-jpgthigh. It was caused by a routine immunization, but we didn’t realize he had a bleed for ten days. I knew immunizations could cause warmth and swelling in the injection site so, at first, I didn’t think anything of his leg being sore. But ten days after the shot, Chris would cry any time his leg was moved or touched. I took him to the pediatrician’s office, but the doctor didn’t have a lot experience with hemophilia, so we ended up at the hemophilia clinic. The nurse knew immediately it was a bleed. I didn’t put two and two together; I didn’t realize it had been the shot that caused the bleed. Needless to say I was terrified, what had I done to cause him to bleed? I remember sobbing as he was getting that first infusion. The guilt really hit hard that I had missed his bleed and let it go for so long.

Chris’s pediatrician worked out a plan for the rest of Chris’s childhood immunizations. He had the same nurse give each injection with the smallest needle possible. We would sit in the office about twenty-thirty minutes with pressure on the site, then go home and put ice on it. He didn’t have any more bleeds from routine vaccinations.

Chris’s next bleed didn’t happen until he was almost 7-years-old. We were at a baseball game and were watching him run between the bases. His left leg was dragging behind him like a twenty-pound weight. Chris looked like he was going to fall and really hurt himself. That night while brushing his teeth, he couldn’t put weight on his leg. Again, I didn’t think it was a bleed. I waited until the following morning and took him to the pediatrician’s office as the HTC was closed. It was decided he did have a bleed and we went to the hospital for treatment. I had more guilt for waiting.

I missed the signs for a lot of bleeds as Chris was so active and didn’t bleed when he was young. He fell off a 3-foot playground platform around age 3 and didn’t get hurt, and got hit by a bike at age 2, no injuries. So getting hit in the ankle with a soccer ball in gym class should not have caused a bleed, but it did. Sometimes it would be a day or two before we figured out something was a bleed before we infused. Also Chris was not always forth coming with injuries as he didn’t want to get stuck with a needle, or didn’t want to miss baseball. Guilt came with each prolonged infusion.

Now that I look back, I think part of missing bleeds may have been denial. Chris went for so many years as a toddler without a bleed. Things that happened without injury when he was 5-years-old now were the cause of a bleed at age 7. There was a learning curve for sure, but it also came with acceptance of his disorder. For us, prophylactic treatment wasn’t an option when Chris was little due to the concerns about the factor products at the time. Once factor became more safe, I wasn’t as hesitant to expose him to factor. When Chris started playing baseball in high school, we learned he either had to prophylactically treat, and treat again for break through bleeds or he couldn’t play. But he didn’t prophylactically treat for anything else.

Today, Chris does prophylactically treat once a week, and infuses again for breakthrough bleeds. Sometimes he isn’t sure if he has a bleed from exercising, or if his pain is normal sore muscles from his workout. It’s a new learning curve for him. Chris has learned he can’t bowl without infusing as he will get a hip bleed. When he is climbing, he will always stop and do an extra infusion if he even suspects he may have done something that could cause a bleed. He knows he can’t wait and see.

So who is the “typical” person with hemophilia? I don’t think there is one. Each person with hemophilia has their own bleeding issues. Each family has their own way of treating bleeds, whether it’s prophylactic treatment, using ports, or only infusing with each new bleed. Each person will experience their hemophilia in their own way. Bleeds will be missed, but if you can learn from each experience what fits your child and their needs, they can experience their own “normal.”

Cathy lives in Colorado with her husband, Alan, and has two adult sons, Andy and Chris. Chris has severe factor IX and is attempting to summit the highest mountains on all seven continents.

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*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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