Here is an update that we emailed out, and it kind of summarizes everything. IN a nutshell, if we had not circumcised him, we may not have found out till it was too late. So, blessing in disguise, I guess. I forget that I had a baby four days ago. If my boobs were not rocks, I would have no clue. We are tired and scared, but hopeful to bring him home today or tomorrow. Love you all and am sorry to be out of the loop. The social worker at the hospital told me to start exzercising asap to help with depression, so Cathe and I will be meeting up in teh living room real soon!
John Michael Orr was born on Friday, December 11 at 12:01pm. He was 7 lbs 6.5 oz. and 20 in. long at birth.
We can’t express enough how much we appreciate the congratulatory emails and voice messages. We are very fortunate to have such great people in our lives. We are writing you tonight to update you on John.
Please understand that we are using this method of communication very selfishly, as we would prefer not to explain this situation over and over again – it’s tough enough to explain once. John has been diagnosed with severe hemophilia A. Hemophilia A is a disease where a protein (factor VIII) deficiency exists that is critical to the blood coagulation process. John has the “severe” version because his blood contains less than 1% of factor VIII. It is commonly thought that hemophilia is a hereditary disorder; however, a genetic mutation occurs in about 50% of the cases. Considering that Christine and I don’t have evidence of hemophilia in our family tree, our hematology and genetics counseling group believe that a genetic mutation must have occurred. We are extremely fortunate to have one of the best hematology centers in the US located about 3 miles from our house at Stanford Hospital.
While this news initially dealt us a heavy blow, we are optimistic after having numerous conversations with the experts. Please be patient with us as many challenges lie ahead, and we are a little overwhelmed. There are a few things that we learned today that we feel are worth sharing with you:
• Severe Hemophilia A is not life threatening as long as it is treated properly.
• Other than this diagnosis, his vitals are fantastic. He also eats like a horse and poops like a man.
• Proactive treatments (prophylaxis) are available that will help his blood clot like normal.
• He won’t be able to become the next running back for the New Orleans Saints; however, he will still be able to participate in many sports.
• We believe he will be coming home tomorrow afternoon – HOORAY!!
Please do not take it personally if we would prefer not to discuss further at this time. If you would like to learn more about hemophilia, we’ve included a website for your reference: Hemophilia A. There is a lot of borderline inaccurate information/CRAP on the web, so please choose your websites wisely.
Thank you for all your love and support.
Christine, James, Jimmy and John Orr
