My life changed dramatically in June of 1996. I became a first time mom to a beautiful son, Julian. Upon circumcision, he was diagnosed with Severe Hemophilia A, a bleeding disorder that affects one in 5,000 male births. I had no knowledge of hemophilia and was completely devastated. What did this mean for my son? He looked so perfect!
My husband and I dove in and learned as much as we could. We sought out the best Hemophilia Treatment Center in Houston, Texas and began the journey. Julian’s journey with hemophilia was pretty easy. His bleeding was well controlled; he had a port for five years with no infection (and we accessed that port daily for 2 1/5 years while undergoing Immune Tolerance Therapy for an inhibitor).
It was a walk in the park. I just didn’t know it then.
10 years later, I became a mom for a second time! It was an amazing surprise…something my husband and I had been wanting for several years. In January of 2006 our beautiful Caeleb was born. He was a big boy, weighing over 9 lbs. and the doctors were expecting him to have respiratory issues. Caeleb came into this world asleep! And his little lungs were fighting for breath, but he did it all on his own. I knew then he was a fighter, a mighty warrior like Caleb in the Bible.
While in the NICU, the doctors performed several tests and due to the presence of hemophilia in Caeleb’s older brother a factor level was measured. Caeleb also had Severe Hemophilia. The second diagnosis was more devastating than the first. It was with Caeleb that I became a newly diagnosed parent all over again. Everyone told me not to worry because my husband and I “knew how to do hemophilia.” They were wrong.
For everything Julian did not go through, Caeleb did. Excruciating joint bleeds, an extremely high titer inhibitor developed at 11 months of age, more hospitalizations than most people experience in a lifetime, chemotherapy to help eradicate the inhibitor, four ports, relying on a wheelchair and a walker and more missed school days in one year than most children experience in their entire school career and he has a debilitating fear of needles.
Caeleb has an inhibitor that is extremely difficult to treat. Now that his inhibitor level is down to 5.4 (from over 2200), we should be able to start Immune Tolerance Therapy. But here’s the clincher…he’s allergic to factor VIII.
We have made many trips to Denver, Colorado for additional opinions and treatment and working with two Hemophilia Treatment Centers (our home HTC is in Albuquerque, New Mexico) and an allergist at National Jewish in Denver. It can be difficult to coordinate care with a larger team of doctors but you do what you have to do.
I have hope.
Hope that the allergy will be tackled and that Caeleb can take Factor VIII.
Hope that his bleeds will resolve in a shorter amount of time.
Hope that he conquers his fear of needles.
Hope that one day inhibitor treatment in hemophilia will progress.
Hope that all individuals with a rare disease have not only a diagnosis for their condition, but that their lives are filled with joy, love and a hope for their future.