Moments of Grace for Uninformed Doctors and Nurses

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by Cazandra Campos-MacDonald |

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There are moments in our lives that are seared into our memories. Some of those in my life include getting married, giving birth, starting a new job, and bringing my now-husband to meet my family. One vivid memory is when my obstetrician told me that I would soon know more about hemophilia than the doctors I would encounter. I thought he was exaggerating, but learned quickly that he was correct.

When my oldest son, Julian, was born in 1996, we lived in Houston. The Texas Medical Center there is well known, and people travel to it from all parts of the world to seek help. If I was going to raise a child with a rare bleeding disorder, Houston would be a good place for my husband and I to learn how to take care of Julian. I was grateful to have access to this well-respected medical center.

Early in our journey with hemophilia, my main fear was that I would not recognize the signs of a bleed. How would I know? Would I know what to do? Fortunately, the hemophilia treatment center (HTC) provided the answers we needed and helped us connect to the local bleeding disorder community. But one moment from Julian’s first year of life is especially memorable.

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Julian’s hand began to swell to the size of a tennis ball. He looked at me with his big, beautiful, hazel-colored eyes. I immediately called the HTC and was directed to take Julian and the single dose of factor in my refrigerator to the emergency room for an infusion — his first.

Once at the emergency room, I did what the HTC staff told me to do. I told the nurse that my son had a bleeding disorder and that he needed an infusion immediately. I impressed upon him that we would wait for any exam or tests that needed to be performed, but not until after the infusion. The nurse looked at me and said, “I’m sorry, your son looks fine. You will have to wait. There are people in need of attention more than your son.”

I was stunned. Again, I tried to explain the situation. Then I realized the nurse did not know anything about hemophilia. How could he not know about hemophilia when the HTC was across the street? My husband finally arrived to help, and he managed to keep his voice down a bit more than me, yet he received the same treatment.

My story is one that many in the bleeding disorder community understand firsthand. Yet almost 26 years later, there are emergency rooms and clinics that don’t know how to treat people with bleeding disorders. How is this possible?

Our society leads us to believe that medical professionals are all-knowing. However, when doctors or nurses are in training, many are determining their specialty. Some specialize in general practice, but not all of them regularly see hemophilia, as it’s a rare condition. It is hard to offer grace to a physician or a nurse when a loved one is in pain and needs help.

It has taken me many years to understand that not all medical professionals have the answers. Therefore, I do my best to offer grace when possible. When a clinician asks questions, I eagerly give answers. In these grace-filled moments, I realize that maybe my interactions will help someone yet to come.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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