Winter 2004 | Through A Fathers Eyes / Dave Burgeson

We had been told that raising a child with severe factor VIII deficiency would present challenges, but I never expected our first visit to the emergency room to be my fault. I was passing through the family room and I noticed that my son, still too young to walk, couldnt reach his little plastic airplane. My hands were full so I slipped my foot up behind him and slid him forward. Bottoms up, he tipped slowly over onto the toy. A small cut above his eye would not stop bleeding and we were on our way to the emergency room.

At our local hospital we learned some important lessons about how to get care for our chronically ill child. We knew enough to ask for factor to be infused before anything else and we wanted to know if a stitch would be advisable. The hospital staff was interested in getting a temperature and weight and were not ready to address the slow steady bleeding above our childs eye. Though the emergency room was quiet we waited, growing more and more concerned about the time it was taking for treatment to begin. We had a lot of faith in medical professionals and were somewhat in awe, but our son was bleeding. We began to realize that things were not going to be resolved with us continuing to wait quietly for something good to happen.

We began to assert ourselves and collaborate with the professionals. They had at last called the Hemophilia Treatment Center as we had requested. As we questioned why they had not begun to treat our son, we were told that they were thawing Cryo-precipitate rather than use the factor we provided because the HTC said to treat with 500 units and the vial we had provided was only 480 units. The bleeding went on untreated while an outdated medicine was being prepared because of a difference of FOUR percent! Anyone with experience with a bleeding disorder knows that treating quickly with a slightly smaller dose is better than waiting. The ER staff was not knowledgeable in the area of bleeding disorders and this was an important lesson for us.

This experience encouraged us to approach the hospital administration and work towards a solution to such delays. We knew we were too far from a treatment center for emergencies and even too far for routine treatments. Together we created a protocol that satisfied our sons healthcare needs and the hospitals requirements. Since then, when needing factor, we go directly to the Pediatric Department and begin treatment with no loss of time.

We have learned to be assertive and cooperative when seeking treatment for our son and to prepare for emergencies before they occur.