My son has a life-threatening disease. Here's how I learned to cope with his diagnosis, and how my family is stronger as a result.
When my first child was just three days old, my husband and I were told that our baby had a genetic mutation that resulted in hemophilia, a life-threatening bleeding disorder.
Don't know much about hemophilia? Neither did we, until that moment. It's a blood clotting disorder—my son's body couldn't form clots, the way the rest of us can. For my son, we learned, taking a wrong step and wrenching a knee without even knowing would trigger endless bleeding (called target bleeds)—necessitating bed rest, ice packs, and IV treatments to replace the missing factor in his blood that helps form a clot to begin with. His joints would swell to amazingly frightening sizes and, I now know, the pain involved in such injuries is enough to break any mother’s heart.
That life-altering diagnosis erased whatever glorified version of motherhood I had been looking forward to. I busied myself with figuring out ways to ensure my son would never get a potentially-fatal internal bleed, something that my husband and I were very afraid of. In those first months of baby-proofing my house, I cut up yoga mats and covered all the sharp corners of furniture and counters. I padded the floors and the knees and elbows of my child’s clothing. My son wore a helmet. We didn’t invite a lot of company over to our home.
For the first four years of his life, my son received hundreds of IV infusions of factor protein to stop his bleeds. Those treatments meant holding him down, which usually took two or three adults, and sticking needles into his veins. The problem is that babies and small kids have super tiny and fragile veins, so missing one or blowing it out is easy. In addition, whenever he developed a bleed, we would have to rush our son to the hospital at all hours of the day or night, then put him through the trauma of being held down by multiple adults to keep him still enough to get needles into his tiny arms. Imagine being a toddler and having your knee swell up and ache badly, but you lack the vocabulary to tell people what's happening. And then you’re in a scary and loud place where people are trying to stick you with sharp things. It’s enough to put some adults over the edge—and certainly this parent, who had to witness the whole thing. Hearing your child scream in terror while nurses hold him down and stick him with needles is agonizing.
The stress began to take its toll on my health. My hair started to fall out and I wasn’t able to sleep. I started to drink a lot more wine. I internalized his diagnosis as somehow being my fault—easy to do after a nurse flippantly told me, “it’s always the mother, that’s how this gene is inherited.” To this day, I don’t know if the gene mutated in me before I passed it on to my son, or if nature did her dirty work while my son formed in my womb.
As my son grew older, my day-to-day life was different from my mom friends’. In my purse were a spare tourniquet and instant cold packs. We stashed boxes of Band-Aids in every bag, car, and room in our house. We kept the hospital go-bag by the front door.
Then, shortly before my son turned 4 years old, we experienced a turning point. In prep for a treatment, my exhausted and terrified son had to be secured as nurses inserted an IV into his forehead—our last option after 9 hours of holding him down and looking for other veins that would take the needle.
After that, we told our doctor we were ready for our son to have a port implanted in his chest. He had the port surgery soon after his fourth birthday. With the new port came hassle-free treatments in the comfort and safety of our own home. We gave our boy small tasks so that he could feel like he has control over his treatments, like choosing his Band-Aid or telling us when to insert the needle. We cleaned out a section of the fridge to put his medicine and we organized a shelf full of supplies from bandages and syringes to face masks and surgical gloves. I became a stay-at-home-mom in order to manage every aspect of hemophilia including missed school days, ordering more supplies, and booking appointments.
Treating hemophilia like a special project has helped me stay focused on the positive aspects of this disorder, including the tight community of hemophilia families we are now part of. One quick post to Facebook asking for advice or venting about my frustrations and I am given a massive virtual hug by my fellow hemo moms from around the country.
Today, my son is nearly nine, and this summer he will go through training to infuse himself! He is a vibrant, whip-smart, healthy kid with giant dreams of curing his disorder. As a mother, watching him grow into a strong person who is fully in charge of his hemophilia has been the best possible outcome.