NAIT – A Life Changer

Happy Thursday to all of my loyal readers! Another week of this pregnancy has just flown right out from under me. I’m currently 22 weeks pregnant and into my third week of IVIG treatments. Yeah! It truly boggles my mind that next Thursday is Thanksgiving, which means that next Friday is Clara’s second birthday. Not only is this day a significant milestone for our daughter, but it also marks two years since NAIT entered and changed our lives.

Up until the day Clara was born, the event that most significantly impacted our marriage was the death of our son, at 19 weeks, 3 days gestation in August of 2008. If I had the strength back then, I would have kept a journal, or even a blog, to document this traumatic time in my life. In particular, it would have been even more meaningful if I had been able to put into words the anguish and pain that plagued me for the better part of the six months following his death. During this six month period, part of the healing process, for me, was the realization that I was no longer the same carefree, naive person. I know that people change during the natural course of their lives, but this was no ordinary change. I truly feel that his death caused me to question and challenge many of the values and beliefs that I had once held. Looking back on this time, I realize that it laid the foundation for our next big hurdle: NAIT.

Both our son’s death and our experiences with NAIT (Clara’s struggle during her first month of life and the challenges we now face with this pregnancy), have left scars that will continue to haunt us throughout the remainder of our time as parents. Both have allowed us to grow, change and appreciate the things that we once took for granted. Both will impact the way we raise Clara and our unborn daughter. And both experiences will be shared with our children when we feel that the time is right to introduce them to some of the harshest realities that we faced while growing our family. 

So, how is this all related to Dr. James Bussel’s work? Well, if you haven’t experienced it yet, you will one day be faced with an experience that motivates you to want to give back, to share some of your pain with the world so that one day, others may perhaps be relieved from some of their own. And this, my dear readers, is what NAIT has done for me. In my struggles to understand why my family happens to be on the wrong side of the statistics, I have become increasingly aware of the impact that our story could perhaps have on other NAIT parents — those just learning about NAIT or deciding to face this disease head-on by adding to their own families.

Not surprisingly, when the opportunity came to participate in a study to advance NAIT research, I was totally on board. In September of this year, I agreed to be a part of Dr. Bussel’s longitudinal NAIT study. If you click on the following link – Dr. James Bussel – you will find that the most recent fetal and neonatal thrombocytopenia publication. The data collected for this article comes from parents who were willing to allow their pregnancies to be monitored in the hopes of adding to the ever-growing body of NAIT research. What does participating in the study mean for me? Well, it means that all of my IVIG infusions are prescribed and monitored by Dr. Bussel’s staff, I have additional lab work to complete each month, all of the results of my Level II ultrasounds are forwarded to his office, and once our new addition is born, her platelet numbers (which will be draw immediately upon birth) will be used to help determine which treatment regimen is most effective — one IVIG infusion per week with a daily dosage of prednisone or two IVIG treatments per week without the daily prednisone. Since I am on the two IVIG infusions per week track, our data will help support this option.

So in my own search for justification and an understanding of all of the events that have led me to this point in my life, I hope to be able to contribute in some small way — whether it be through these blog entries, the data collected from this pregnancy and/or the book I one day hope to write — to ameliorating the pain of other parents who happen to find themselves in the same places we found ourselves on two of the most important days of our lives to date – August 4, 2008 and November 25, 2009 – our children’s birth dates.

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