A frequent routine.
“Flash.” A small line of blood fills the piece of IV tubing before me. As a 28-year-old pediatric resident with hemophilia, I wake up fifteen minutes early every other day to mix my medicine and draw it into a syringe connected to an IV needle. I apply a tourniquet, find a trusty vein in my elbow and infuse my treatment, before heading to work.
However, this wasn’t always so routine for me. I’ve heard many stories from my parents about how the early years of getting my infusions every other day were full of tears, challenges and fears as they learned to care for me.
What is hemophilia?
The reason I need medication is that I have, Hemophilia, an inherited bleeding disorder in which patients do not produce an important factor to completely form a clot. This means that I need an IV infusion of a missing factor protein to prevent both spontaneous and injury related bleeding.
As opposed to minor injuries like a paper cut, the major concerns in hemophilia are bruising and in particular bleeding into the major joints such as the elbows, knees and in my case ankles. Repeated bleeding into my right ankle has left me with no cartilage to separate my ankle and shin bone, limiting my ability to run and jump, but thankfully not significantly affecting my ability to walk.
A hug can help.
This joint damage is what parents of patients with hemophilia are trying so hard to prevent in their young patients. The poke itself is painful, the anticipation of the poke is anxiety-provoking and the knowledge that missed infusions could result in bleeding or joint damage is always in the back of a parents’ mind.
Though practices vary, many patients are started on factor replacement by their first year of life. In the early years, it is often quite difficult to find a small, fragile vein in which to give the medicine particularly as the patient struggles and cries for fear of the needle. Thankfully, many parents are trained to give their child their infusions at home, but this can be challenging for both the patient and their parents.
When I was young, my dad or mom would hold me in a tight hug on their lap while my nurses did the IV. I grew to understand that I needed the medicine and could be distracted by that hug long enough to get my treatment; yet, many patients continue to struggle with their infusions throughout childhood.
Making future treatments a little brighter.
Now, in the hemophilia clinic at Nationwide Children’s a better process exists in the form of a new virtual reality headset and game system. I have seen it firsthand – a virtual reality headset was placed over the patient’s eyes and he became fully immersed in playing a game throughout the visit. I was fascinated at how calm he was during the entire experience. His nurses, who had worked with him over the last several years, were amazed at how well he did. His mom was impressed with how well the experience went.
I can only imagine how impactful this new venture fusing medicine and technology will be in improving the treatment process. As the device was in development, I heard stories about the many modification efforts to make it perfect it and meet the specific needs of pediatric patients. This commitment makes me proud to work in Nationwide Children’s Hematology clinic. The staff is truly dedicated to improving their patients’ lives in big and little ways, just as they did mine.
For more information about Nationwide Children’s hematology team, click here.