The Basics of Hemophilia

I’ve been saying for the last few weeks that I would like to start a blog. So, here I am. As if I’m not already busy enough with a family, a nine-month-old, work, doing three masters courses, and having a life of my own. No better time to start one than now, hey?

Anyway, as you are all aware (and I assume the reason you are here), Ethan has hemophilia.

I will get the boring, technical stuff out of the way, first… So, what is hemophilia you ask? Well, to put it in simple terms, it is a bleeding disorder. When someone has hemophilia, their blood does not have enough clotting factor, which is a protein in blood that controls and stops bleeding.

To go into further detail without confusing the heck out of you, there are two types of hemophilia: Hemophilia A (known as Factor VIII deficiency) and hemophilia B (known as Factor IX deficiency). Basically, they differ in the clotting protein they are missing from the blood. But this doesn’t really matter much to you as readers. The result is the same for people with hemophilia A and B. Basically, they both bleed for a longer time than normal.

Hemophilia is further classified as mild, moderate, and severe based on the amount of the clotting factor in the person’s blood. If someone produces less than 1% of the affected factor, they are considered severe. Someone that produces 1% to 5% has a moderate case, and someone that produces 5% to 30% of the affected factor level is considered to be mild.

Clear as mud? Yepp, I thought so!

Trust me, it can be a lot to process. We felt the same way too… Actually we still do at times!

So, Ethan has severe Hemophilia A. This means his body produces levels of less than 1% of factor eight protein. With Ethan’s factor eight levels being so low, his blood cannot clot properly when he bleeds. Where does the problem lie in this? This causes an extremely high risk of bleeding when he gets a bump or bruise of any sort.

I won’t get into much detail on this part of it – I will talk more about it one day in case you are interested – but it is also important to understand that Hemophilia is an X-linked genetic disorder, which means that it’s passed from mother to son on the X chromosome. If a mother is a carrier for hemophilia (like I am), there is a 50% chance that her son will be affected with this bleeding disorder. Wow that’s high, I know!

And yes, I know what you are thinking… That means if Peter and I were to have another son, there would be a 50% chance that he would be affected as well. I will give you a better break down of how it works another day – I promise!

So, now that you have a basic understating of what hemophilia is – remember, it’s a bleeding disorder – we’ll get into the fun stuff. You can follow along our journey to see what sorts of things we really go through as the parents of a little boy with hemophilia.

But, before I do that I want to back track over the past nine months and tell you what we have been through to get to where we are today. I will share some stories and photos with you to have a better understanding of Ethan’s first months of life.