Hi! I am Ian's mom, Sarah, and I hope to use this blog to keep others updated on Ian's progress as well as educate and inform any others about Hemophilia as we learn ourselves. For the first few blogs, I plan to let you know about our experiences so far. Ian is 9 1/2 months old. When we're caught up, I would like to share more than just medical stuff as there is much more to Ian than just hemophilia.

Our journey with hemophilia began when we learned that we, Michael and I, were expecting our third boy. Our fist two, Isaac, then 13, and Israel, then 1, were not hemophiliacs. I knew the chances of 3 healthy boys in a row were very slim, but I rejoiced in the blessing of a son.

Hemophilia is a bleeding disorder in which the victim's blood does not clot properly. There are several varieties, but Ian's happens to be Factor VIII deficiency, which runs in our family. It is passed on to sons through a carrier mother on the X chromosome. Boys are XY and girls are XX so if the mom passes on the X she got from her father, the son has the condition. In this particular variety, girls are usually carriers while boys have the condition.

So, once we found out we were having a son, an amniocentesis was ordered. Through this test we learned that Ian was in fact a hemophiliac.
My immediate response was to try to learn as much as I could about his condition and what to expect. Having two older children meant I knew I would rather learn lots before he was born and I became hormonal and sleep deprived. Plus education helped me feel in control of this situation.

We made an appointment with our local Hemophilia treatment center, or HTC. It was right here in the closest major city to our small town. We later came to appreciate how fortunate that was. Many families have to travel long distances to visit their HTC and ours is less that 15 minutes away. The team at the HTC was very helpful in planning for our delivery and giving us LOTS to read. One of the most helpful books was written by a mother of a hemophiliac son who had interviewed lots of other families as well.

We planned for a c-section to limit the trauma to his head, ordered a medic alert bracelet, read all we could, and prayed a lot! I own a day care center and we are very active in our church, so we asked the HTC's hemotologist nurse practioner to come and give a talk explaining what to expect to anyone who might provide care for Ian, or would just like to know more about Hemophilia.

In all 19 people showed up for the meeting, and several others asked to have it video taped as they had other obligations. I can't tell you how encouraging and moving it was to see all those faces ready to help us care for this special little boy. It was a great comfort and blessing to know that we are not in this alone.