Health Magazine

A Day in the Life of a New Hemophilia Diagnosis

Posted on the 25 June 2012 by Billcookonline @billcookonline

Guest Blog: Shelley Moore, R.N., National Director of Hemophilia at BioPlus Specialty Pharmacy

Last week, I met a young family who just had their first baby boy. He was about six weeks old and as adorable as any other little boy could be. What I knew and the family knew, but others cannot visibly see, is that he has severe hemophilia A. This diagnosis came as a shock to the family, particularly since they have no family history of bleeding disorders.

The mom is a schoolteacher and the father is a local police officer and Afghanistan war veteran. How poignant that both parents of this child have chosen careers in service to others. This young couple — who are just starting their family while serving their community — are now faced with a diagnosis that will impact their entire lives. They are struggling to understand the diagnosis and what it will mean to their family and feel uncertain about how to manage this lifelong condition.

My thoughts and heart have been with them as I wonder how they must feel, knowing that their new little baby will require a lifetime of needle sticks, thousands of dollars in factor replacement, a home health nurse, a relationship with a specialty pharmacy and the Hemophilia Treatment Center providers, and just plain learning all they can about their baby’s condition.

Their heads must be spinning as they try to understand the medical side of hemophilia, such as:
• What’s prophy?
• What’s an infusion?
• What’s factor?
• Which product do we choose?
• Who do we trust with his medical care?

Aside from these medical questions, the family will surely be wondering:
• Will he live a normal life?
• Can he play baseball?
• Can we travel?
• Can he play like other kids?
• Does someone need to quit work and stay home with him full time?
• If I hold him too tight will I hurt him?
• Did I do something to cause this?
• How are we going to afford all of this?

As I talked with the mom, tears welled up in her eyes as the worry and questions of the future washed over her. I then looked over to the dad, as he quietly rocked the baby, and then to the baby himself as he lay there, gently sleeping with no outward sign that anything is wrong with him. In moments like these, I realize that our work at BioPlus is really a call to service. I am here to support, listen, and provide care to families during their darkest hours. At BioPlus, this calling is not taken lightly, which is why all of our staff interactions are based on our “CART” values (Competence, Accountability, Respect, and Trust).

We are more than just a company that ships a box of drugs, we are a company that provides competence through our knowledge, we hold ourselves accountable in all aspects, we provide the utmost respect to our patients and our coworkers, and we provide all of these things so our patients can trust us.

In my time with that mom, she worried aloud: “Is my child sick because of something I did?” I assured her that her and her husband did not cause their son’s condition. The hemophilia just happened. It’s known as a “spontaneous mutation.”
Hemophilia is generally an inherited X-linked disease, in which a hemophilia gene on the X chromosome is passed from a mother to her son. In this case, there was no family history of a bleeding disorder so it was one of the 30 percent of cases in which a “spontaneous mutation” is responsible. In time, testing and a detailed family history will be performed by their Hemophilia Treatment Center to determine if there is any family link. If there is not, the gene from either the mom or the child just mutated. It simply changed and no one is to blame.

As BioPlus works with this family, we aim to provide more than just the delivery of medications. We provide the emotional support, friendship, respect, and trust that they will need in taking care of their loved one with this lifelong condition.
This family is now part of a large community of hemophilia providers, advocates, and supporters. They will be supported by their own family, as well as their doctors, pharmacy, nurses, and all involved in the care of this little boy. I think they will settle into knowing a new “normal” for their family. They will gain knowledge and support through our wisdom as their therapy management partner. Our actions then take on an entirely new meaning of grace, genuineness, and steadiness so they will have trust in who we are as a company taking care of their precious little boy. We will be a constant and steady reminder that their new “normal” is handled with competence, accountability, respect, and ultimately trust.

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