Hemophilia Mom

When our son was about 4 months old we started noticing some bruises on him that we couldn't really explain. I've always bruised extremely easily 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 it up more than once at his well-baby appointments but the Dr we were seeing 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.

 

As the bruising increased, I knew there was something more going on so I pushed with the Dr 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 we had more blood work done to run a few more extensive tests.

 

After a lot of frustration and multiple tests (having blood drawn on an infant is not fun!), 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 35,000 male children in the world and for which there is no history in either mine or my husbands family. It means that he is missing a protein factor in his blood that helps with clotting. There is no cure for this disease but it is manageable with treatment. 

 

As parents, this diagnosis was heartbreaking and scary, of course. Yet, 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. He has a plan for his life and a plan in all of this. 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.


Although Hemophilia is a "disease" - that word makes it sound so much worse than it is. His condition is not life-threatening in most circumstances. He currently receives a weekly "factor infusion" treatment which replaces the missing protein factor in his blood so that it will clot and prevent joint bleeds. It was a tough road to get to this place with his prophylactic care but it's becoming our new normal and he is doing so well.

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