My first baby was also my first baby with a bleeding disorder. My husband and I did not know this while he grew inside of my body. So instead of learning about factor products, ports, or how to keep him bleed free, I read about natural childbirth, how to make my own baby food, what type of crib mattress was best, to vaccinate or not to vaccinate, and a whole host of other things that all seemed trivial the moment that unknown doctor on the other end of the phone said, “severe hemophilia A”. The world literally spun when his hematologist, who we met only moments before, sent him for a head CT scan. Then this most wonderful hematologist caught me as I started to fall when he told us that our 3-day-old son, was being transferred to the NICU and a neurosurgeon was on his way to operate on the massive bleed in my son’s brain.
Our journey started with a bang as all parenting journeys do, but instead of lamenting over sleep schedules, breast or bottle, childcare options, car seat brands, or whether we have over or under dressed our tiny little baby, we were asked to make medical decisions. Life altering decisions. Ones we were not equipped to make. Not because we did not love him and want the best for him, but because we did not have medical degrees. We did not have a family history of a bleeding disorder to turn to, or family members to ask what they thought were the best option. No, we looked at doctors, nurses, surgeons, and pharmacists as they rattled off a new lingo to us.
Our world continued to spin. As soon as we made one decision and things seemed to calm down, to find some sort of normal, we were back in a hospital room or a surgery waiting room, hearing how we had to make a change because our previous treatment plan was not working. That an inhibitor test had come back positive and then it got higher and higher. Life revolved around one major medical decision after the next.
It was exhausting. It was overwhelming. Oftentimes we felt unqualified to make these decisions. What if we made the wrong decision; what if it did more harm than good. I will admit, we made some wrong decisions along the way. We listened to doctors instead of our instincts. We dealt with the aftermath and we changed course. We learned along the way that we know our son and what are the best options for him. And it was hard. I cried more often than I would like to admit. I sat on the floor of our shower as the water grew colder, unable to move. Some of the memories are painful: like the time when my maternal grandparents died within a week of each other and my mom sat in a hospital room with me instead of traveling to her parents.
Yet we have come to learn one important thing, that we must make the best decision for our son at the time, with all the available information we have. We cannot be plagued by worry about what may happen in 5 or 10 years because I do not know the future. I can only see today and know what is best for him and his life right now. Right now means looking at today, not tomorrow, or next week, or two years from now. Because today I am grateful that he is healthy, happy, and thriving in spite of bleeds.
As hard as it has been and as much as I wish I could rewrite history, I am incredibly thankful that we get to make the best decision for him with access to the best medical care. I am grateful that my son has access to a variety of bleeding disorder treatments and we can look at preventing bleeds and a possible painful future.
Today I am thankful for how far we have come, of all the decisions we have made and remade, because that means that my family has the ability to decide the best care. Looking back, I see all the wonderful things that have been born out of some incredibly painful times including the friendships we have made and the opportunities we have been afforded. I am thankful in spite of our pain and of my son’s pain.
Emily, her husband, Geoff, 7-year-old son, Logan, 4-year-son, Ryan, and 1-year-old daughter, Payton, live in Minnesota.
*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.
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