Now a little advice for parents dealing with hemophilia for the first time. It sucks when you first find out. It was almost unbelievable to me. Men don’t carry the gene so Walter would have got it from me. Because I was adopted and I don’t know who my biological father is I will never know if this runs in my family. Sometimes I felt as though it was my fault, and I didn’t feel it was fair. I didn’t like for people to ask me questions about Walter because I didn’t feel it was their business. However, I’ve grown a lot since then and I’m not embarrassed by it, and I don’t want Walter to be.
Walter’s Hickman line got infected and that infected his blood. A blood infection could be deadly and I honestly told the doctor I don’t like the Hickman. Walter was around 6months at this time, and they said his hickman line could be replaced with a portacath. Now the portacath could be placed under his skin and the risk of infection is lower. However, with a portacath it has to accessed with a need and Owen and I would have to learn. Later on in my blogs I will have a video of me accessing Walters Port and giving him the factor VIII.
My first thought to finding out my child had hemophilia was, “How are we going to deal with this?” I was currently a second year student and all of this was happening around finals. I immediately thought the worst. I felt like he wouldn’t be able to have a normal childhood. I also felt as though his father and I wouldn’t be able to accomplish the goals we wanted to in life. I knew I needed to educate myself on this illness. The first step the doctors had to make was putting a hickman line in Walter’s chest, for him to get factor VIII. Walter had to get a hickman because he was a baby and that’s the smallest thing you can put in a baby. Factor VIII is a medicine that helps the blood clot. It is something a hemophiliac needs.
Taking care of a central line was much more harder than I thought. We weren’t told of how easy these lines can get infected; especially with a baby.
Hemophilia A is the most severe type of hemophilia. A best way I can describe hemophilia is when a “normal” person falls and bumps their knee they heal with a scab eventually. Unfortunately, a child with Hemophilia cannot do that on their own. If Walter were to fall on his knee and he knotted or scrapped it medicine would have to be used.
After one week of having Walter at home he was due for a doctors visit. It was a regular check up however, when Walter was in the hospital they did something called a spinal tap. The spinal tap left a hematoma in the middle of Walters back. This is when things took a turn in Walters life. Once the hematoma was witnessed Walter was sent to Children’s Hospital in Minneapolis MN. They diagnosed almost immediately with Hemophilia A.
Courtesy of Google Images