Infusing Love: Radical Change

 
When my son Thomas came into the world, he radically changed my knowledge base about hemophilia and other bleeding disorders. As this March comes to an end, I’ve been thinking about how far we’ve come as a family since Thomas’s diagnosis. I decided to look for the original email we sent to friends and family to announce Thomas’s birth and his diagnosis.
I wasn’t surprised to see that my husband and I were pretty forthright and open about hemophilia. We shared what we knew, no doubt crafting that email message with the assistance of some educational brochure. But what I found interesting about that email was that fourteen years later with a lifetime of good bleeder stories to share, I would still explain hemophilia in a very similar way today:

Thomas is a very sweet baby.  He is sleeping very well, giving us anywhere from 2 – 4 hour stretches at night.  He is very strong, already trying to hold his head up.  He is nursing like a champ and seems to enjoy peeing all over me during diaper changes and when he’s just lying in my lap. 
However, Thomas does have a health complication that some of you may know about by now.  We decided to circumcise him and he continued to bleed from the procedure that first day.  The doctors (everyone from my OB/GYN to our pediatrician, to the hospital staff) tried several approaches to stop the bleeding. Nothing seemed to help.  By Friday, our pediatrician ordered some lab work and with that, Thomas started oozing blood from previous needle sticks.  The lab results came back and showed that Thomas has severe Hemophilia A, or classic Hemophilia.  This means that he lacks the clotting factor (Factor VIII or 8) for his blood to properly clot.  It is a life-long condition, but Thomas is expected to live a full, normal life.  Hemophilia is treatable with a recombinant drug therapy that eventually we will be able to administer at home.  It doesn’t mean that he bleeds faster or easier than you or me, it just means that he lacks the ability to clot properly.  It is passed from mother to son as a mutated X chromosome in 70% of hemophilia patients.  There is no known family history in our case, which means either the X chromosome mutation started in me or it is a new mutation in Thomas.  We will eventually be going through some genetic testing to determine where this started.  If it started in me, then Nora will have to be tested to determine if she is a carrier.
Obviously, this came as quite a shock to us, but we have been overwhelmed with support from the University of Colorado Health Sciences Center and the Mountain States Regional Hemophilia & Thrombosis Center (MSRHTC).  The director of the MSRHTC came over to the hospital within 30 minutes of our pediatrician giving us the diagnosis and spent more than 2 hours with us, explaining what all this meant and helping to transfer Thomas into the NICU for his final night at the hospital.  She was a wealth of information and even talked us through Thomas’ first factor 8 treatment (Treatment is administered through an IV, hence why Thomas was moved into the NICU and kept for observation).  We met with the nurses, social worker and physical therapist from MSRHTC last week, and will be making contact with local families who have children with hemophilia in the very near future.  We feel very fortunate to live here in Denver with this excellent resource so close by.  Our pediatrician, who will remain as Thomas’ primary medical caregiver, has been very supportive and assures us that he will be doing his own research to learn as much as possible about this disorder.  (It is not very common – only 1 in 5,000 babies are born with it each year). 
I wish I could tell you more, but honestly, the information has been coming in so quickly that it is overwhelming.  Our main concern is to help Thomas lead a normal life within the boundaries of the hemophilia, which are actually quite broad  (He will probably never play football, rugby, hockey or lacrosse, but hey, that’s doable.)  We have decided just to educate ourselves as much as possible and to love and raise Thomas just as we love and raise Nora.

Many years ago, my husband introduced me to a quote by Hugh Elliot, “Every person you talk to is a chance to change the world.” In learning that our infant son had hemophilia, we immediately put that quote into action.
In order to teach the general public about bleeding disorders, we have to share with them the facts. While March is a great time to do this, let’s dedicate ourselves to sharing more snippets of information to our friends and families about life with a bleeding disorder throughout the year.

Sonji lives with her husband, Nathan, and three children Nora (15), Thomas, (13), & Natalie (11), in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.