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:
- Once the area Dean has chosen has been cleaned, I lay out the sterile field and place all of our supplies on it in the order we will use them. This way I know if I have everything we need, and it helps Dean get through the steps of the process.
- I put on the latex gloves, apply the tourniquet to Dean’s arm, and then clean his hand with an alcohol prep pad.
- After we choose the best vein to access, I take the butterfly needle and place it in his hand.
- When we see a blood return into the IV line, Dean releases the tourniquet.
- Then, we attach the first saline syringe to the IV and flush the vein.
- Next, we attach the factor syringe. The factor is pushed slowly, taking about 1-2 minutes.
- Following the factor, we use the second saline to flush the line.
- I then take a gauze pad to cover the injection site and slowly remove the butterfly needle.
- Dean then places a Band-Aid of his choice over the injection site.
Dean’s Infusion Supplies:
- Recombinant clotting factor
- A sterile field
- Butterfly needle
- 2 Saline syringes
- An empty syringe to withdraw the mixed factor
- A Tourniquet
- Gauze pads
- Alcohol pads
- Latex gloves
- A Band-Aid
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!