A Mother’s Perspective on Her Son’s Life with Hemophilia

Jessica details her son’s life with hemophilia

Some might consider Dean to be “lucky,” because although he has severe hemophilia, he is infused on an as needed basis. He doesn’t receive scheduled infusions of 2-3 times per week…yet. This is not typical for most sufferers with severe hemophilia.

To say taking a needle and piercing your child’s hand to access a vein is no walk in the park is an understatement. Having to inflict pain on your child, so that they ultimately aren’t in pain is heart breaking. Dean handles this with courage and strength like I’ve never seen. Dean is 6 years old and has been receiving factor injections since the time of his diagnosis at 11 months old.

Currently we infuse Dean for incidentals like falling off his bike or getting hurt on the playground at school. He is also infused preventatively for things like trips to the water park where we know he is at higher risk for injury. Infusions for Dean are done at home. We pick a well-lit area in the kitchen or dining room where we have space to spread out his supplies. We usually let Dean have some choices over parts of this routine so he feels like he has some control over the procedure.

Our Infusion Process:

Dean’s Infusion Supplies:

When all goes well, the whole process takes about 10-15 minutes. If I am unable to locate a vein, and have to make additional attempts, it prolongs the process. Sometimes Dean needs to take a breather to get himself prepared for another attempt.

Dean handles at home infusions like a champ! He will start prophylaxis (preventative) treatments in the upcoming months, and we will be infusing him 2-3 times per week. When we start prophylaxis we will have to venture into new territory, and explore other areas to infuse, because scar tissue develops and makes it more difficult to access the same area. It is also healthier for his veins to get a “rest” if we are able to access different areas.

Thank you for taking the time to follow us on this journey. We are privileged to have the support of our family and friends, and the wonderful bleeding disorders staff at his treatment center and the hospital!

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