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Finding a new normal

World Hemophilia Day

Story by Laura Poitra, office manager, Montana Perinatal Center
Submitted by Debra Guinn, MD, maternal-fetal specialist, Montana Perinatal Center

As the office manager at Montana Perinatal Center, I see many women and families who endure a variety of challenging situations. Sometimes families learn that the pregnancy is not going the way they had hoped or, in more extreme cases, that their child will be delivered with complications or other unanticipated conditions. These are not scenarios where any mother-to-be hopes to find herself. As a mom, I know firsthand what it feels like to recalibrate the hopes and expectations you have for your new child. It can be heartbreaking, frightening and sad to receive such news. However, I also know that challenges can be overcome when a team of caring, nurturing and highly skilled medical professionals leads you on the path to a new normal.

My son, Oliver, was born with a genetic bleeding disorder called hemophilia A. Hemophilia A is a bleeding disorder that affects 1 in 5,000 male births in the United States. A typical human body uses a variety of clotting factors, platelets and plasma to stop excess bleeding and promote healing when an injury or cut occurs. For a person with hemophilia A, these clotting factors don’t do their job. That means a minor bump or scrape can be like an open water faucet that just keeps leaking blood. This lack of clotting can put hemophiliacs at great risk of losing too much blood from seemingly insignificant injuries. For my son, Oliver, his case is considered severe because his body makes almost no factor VIII, a critical clotting protein.

As you can imagine, to receive the news that your child has been diagnosed with such a rare and potentially life-threatening disease is devastating. What will his life be like? Will he have to live in a bubble? Is there treatment? Is there a cure? What kinds of changes will we need to make in our lives to optimize his health and well-being? These are just a few of the questions I asked myself as I struggled with the news.

Fortunately, I had caring and compassionate medical providers who offered me excellent education, advice and counseling. I learned how to monitor and perform Oliver’s treatments and actively sought out educational opportunities about the disease. Today, Oliver’s hemophilia is not only manageable, but it feels routine. I can also rest easy knowing that, with treatment, the current life expectancy of children with hemophilia A is as average as other youngsters. Oliver can expect to live a mostly normal life.

The words “routine,” “average” and “normal” never sounded so exceptional to a mother’s ears.

While it certainly didn’t feel like life was normal in those early hours, days and months following his diagnosis, I have learned so much from this experience and from my son. I am better at accepting change and looking at challenges as learning opportunities. Oliver showed me that we can tackle the unexpected together.

Due to appropriate care and ongoing treatment, Oliver is a happy, healthy and very active 7-year-old boy. He loves to ride his skateboard, dance, play basketball, hop on his bike, go swimming, play video games and, in general, be a wild and crazy little boy. Because hemophilia has no cure, he will live with this disease for the rest of his life. But with the help of research, treatment and perseverance, we have created a new normal and it’s pretty great!

Proper treatment and access are vital keys to thriving with this disease and I am lucky, indeed, to be able to provide this to my son. It’s also important to note that access to medical care and support is not readily available in most underdeveloped areas of the world. As a result, many children born with hemophilia A in these underserved areas don’t make it to adulthood.

World Hemophilia Day is April 17. In honor of this day, my son and all others living with or affected by a bleeding disorder, I am sharing my story. For me, it’s a day to educate and spread awareness about this disease. Living with hemophilia has placed some limits on our family, but it has taught us far more. We have learned to think creatively and be more open about what life tosses our way.

Pregnancy, birth and childhood are tough, albeit wonderful, moments of life without adding extra complications. But when faced with additional challenges, it is tremendously helpful to have the support, care and guidance of a team of specialists, educators and community members to carry you forward. I’m grateful for the opportunity to learn from my son, the amazing team at Montana Perinatal Center and the countless women I meet each day at the clinic. You all inspire me as you face a variety of challenges. Thank you, Oliver, for teaching me new ways to approach life and for showing me what is possible ̶ no matter the situation. Thank you, moms I meet at Montana Perinatal Center, for your never-ending desire to do right for your baby, and thank you to the amazing team at Montana Perinatal Center for providing the support and guidance each of these women and families need to tackle their own challenges and move forward. I am privileged and honored to be a cheerleader on your team as you take life on!

First published in Montana Woman magazine, April 2018