With no documented family history, my husband and I first learned about hemophilia when our son Carson was diagnosed at 11 months old. Around 9 months old he started bruising really easily, and those bruises would have bumps in the middle of them. At his well child checkup we asked his doctor what could be causing these and he was stumped. They ordered blood tests for cancer, which came back negative. Over the course of several months we did blood test after blood test. We even did an x-ray, but everything came back negative. My husband and I were getting frustrated and the doctor suggested one last blood test.
The Friday after the last blood draw, Carson cut his knee when he was crawling around on the floor and it would not stop bleeding. I finally got it to stop after an hour of solid pressure. The next morning I took the band aid off along with the scab, so it started bleeding again. Since it was a Saturday I didn’t want to take him to the ER for something small so I went to a nearby urgent care instead. I explained to the doctor what had happened, and the first thing he asked was does Carson have hemophilia? I had no idea what that was so I said no; but a seed had been planted.
The following Monday we got a phone call from our doctor saying that the test came back negative and we had to wait two more weeks before we could try again. We didn’t want to wait two weeks, so we decided to try another doctor that we had heard wonderful things about. We told her what happened at the urgent care and that we would like to test for Hemophilia. After looking at Carson’s chart, the new doctor informed us that our previous doctor was very close to calling Child Protective Services on us. She warned us that if the hemophilia test result came back negative, she was bound to call CPS as well.
Thankfully, it never came to that. On November 19th, 2012 Carson was diagnosed with severe hemophilia A. We were referred to MISTI peds in Boise, Idaho, which was about 45 minutes away from where were living at the time. The appointment day came and we had so many questions, but at the same time didn’t know where to start. I remember the first thing Doctor Meeker told us was this isn’t a death sentence like it was years ago. Your son can live a normal happy life with the new medicine they are coming out with.
We decided to go with a port for Carson since he needed his medicine 3x a week and we wanted to preserve his veins for when he is older. While we were waiting for surgery day, I had my blood drawn to see where Carson got the hemophilia from. Was it just a gene mutation in him? Or was there some hidden family history we didn’t know about? Well news came back that it was a gene mutation from me. Finding out that I was the one that gave this to my son made me feel guilty. Also frustrated that I was a carrier my whole life, and didn't know it.
Surgery day finally came and I was so nervous. Having my baby boy that wasn’t even one undergo major surgery was stressful, but he did so well. While he was recovering, the HTC nurse taught us how to access Carson’s port. It was so overwhelming. I didn’t want to get it wrong and potentially hurt my little man. It took a few tries but I got the hang of it.
We knew from the HTC, that there was a local chapter for support and education. In the beginning, we weren't quite ready for that. Everything was so brand new, a little overwhelming and very confusing. It wasn’t until a few months after port surgery that we went to our first educational dinner, and since that dinner we have met so many new people that understood what our new life was like.
Over the years we have attended fundraising events, walks, and family summer camps together. We have bonded over similar stories of caretaker burnout, problems with our kids school, issues getting factor approved with insurance, and our kids not wanting to be different. Through these experiences we have gained a small but close group that we call our hemophilia family.