Hemophilia Mom

When our son was about 4 months old, we started noticing some abnormal bruises on him that we couldn't explain. I've always bruised extremely easily, oftentimes without explanation, so I thought, "maybe he'll just be an easy bruiser, like me."

 

But over time, the bruising became more frequent and more intense and often we couldn't figure out where they may have come from. Although he was always moving, he wasn't crawling yet and it seemed odd for someone so little to have the adult-looking bumps and bruises. 

 

I brought my concern up more than once at his well-baby appointments but the doctor we were seeing at the time didn't take issue with it and even said "I'm not concerned about it. It's probably something he will grow out of." As a first-time parent that was odd to me but I also "assumed" he knew what he was talking about and had probably seen something like this before. 

 

As the bruising increased, I knew there was something more going on so I pushed with the doctor and he advised having blood work done as well as an ultrasound. All came back normal but I knew there was still something going on. So I pushed again and we had more blood work done to run a few more extensive tests that weren't included the first time around. My anxiety was high as we waited for the results. 

 

In December of 2015, after a lot of frustration and testing, we were finally given a diagnosis of Severe Hemophilia B when he was 8 months old. Hemophilia B is a rare genetic disease that affects only 1 in every 45,000 male children in the world. Hemophilia is a rare bleeding disorder and it means that he is missing a protein factor (factor 9 to be specific) in his blood that prevents his blood from clotting the way it's supposed to. Normal clotting factor levels are between 50 to 150 percent, but someone with hemophilia will have clotting factor levels ranging from 49 to less than 1 percent. Our son's level is less than 3%.

 

As parents, this diagnosis was heartbreaking and scary. We had no idea what to expect or how this would change our lives. The road has been difficult and painful at times. We've been challenged in ways we've never imagined. Yet, through it all, we trust in God and his plan for Lincoln's life. We know that for some reason, this is a part of his design. God created Lincoln and He chose us to be his parents. We have no doubt about that - He has shown us time and time again that we can trust in his plan. So that's what we will do.

 

There are only an estimated 4,000 boys in the US living with Hemophilia B. While this is a genetic disease, there is no history of it in either mine or my husbands family. Hemophilia cannot spread like a virus or an infection. Currently, there is no cure but it is managed with ongoing treatment called "factor replacement therapy" which is an infusion of a synthetic form of the protein factor missing in his blood. 


Lincoln recently had surgery to receive a mediport that was placed in his chest through which is medication can be given. He currently receives his "factor infusion" treatment daily as part of his prophylactic care. This helps his blood to clot better to prevent ongoing bleeding and joint bleeds which can cause long-term damage if not prevented and treated properly.

 

While he has been through SO much more than any 3 year-old should have to go through, he is resiliant and joyful and amazes everyone he meets with his strength. So we take heart in the fact that he is a is a HEALTHY, HAPPY boy! Lincoln has such an easy-going demeanor and such a determined spirit. We've been able to see that since he was very small and I know those qualities are gifts from God that he will need throughout his life and as he manages his condition.


He is yet another reason I strive to take care of my body, mind, and spirit - so that I can be as healthy as possible for him and set an example for how he should take care of his body. So often when mothers have children who require additional medical attention or who have "special needs" of some kind, they neglect the care of themselves even more. But one of the things our kids need most is a mom who is healthy and feels good!

 

If you are a fellow hemo-mom, I'd love to connect with you!

 

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© Lindy Gault