On April 7th, 2006... D and I welcomed a perfect little boy. He was 5 weeks early. Born via c-section after a very eventful pregnancy and birth. 6lbs 8oz, 19 1/2 inches long. Healthy and Handsome.
I knew we had Hemophilia in our family but no one had been diagnosed with it for years. Many years. Like since my great grandfather. When I was pregnant, my OBGYN asked me if I wanted an amnio done and to abort the baby if he had Hemophilia. I said no, absolutely not.
And that was that....
We didn't know anything else until January 10th 2007.
Looking back I blamed myself for not knowing. I am a nurse after all. After Caiden's diagnosis, I looked in my nursing books to see what it said about Hemophilia. To my credit, it was a small paragraph. A very small paragraph.
I could not have known...
In November of 2006, D and I took a short vacation to Eureka Springs. Caiden was 6 months old and just had his shots. On our way home my MIL called. She said his leg stopped working.
Ummm, excuse me? Stopped working (???)
She said his leg was limp and he had a hard knot where his shot had been given. I told her to take him to doctor. After a pediatrician and urgent care visit, we were told his leg might be broken.
It wasn't.
I remember seeing my MIL carrying Caiden down the side walk when we finally arrived home. He was so fussy and in pain she had to carry him around outside to get him to sleep. I had D pull over so I could assess him right away. I will never forget how his leg looked as it swung lifelessly as we carried him back home.
My baby, my sweet baby boy.
Doctors visits, ER visits. No one would listen. Could it be the Hemophilia? No they would say. No. Massage the leg and it will heal soon.
So that's what we did. Massaged the BLEED. He had bleed so much into his muscle that it compressed his nerve. Thus making his leg limp and lifeless.
Looking back, I'm glad we stopped quickly. After massaging his leg for only a few seconds, Caiden was inconsolable. Excruciating pain. It was written all over his tiny sweet face. For the love of sweet baby Jesus, leave my leg alone. And I held his tiny body while he whimpered and shook. Mommy is very sorry.
I took him back to his pediatrician and again requested he be tested for hemophilia. His doc looked me square in the face and said "this baby does not have hemophilia." really? Wanna bet your sweet medical licence on that? Another doc tried to scare me and told me the blood test was very involved and required a lot of blood. Like an entire 5ml. A teaspoon people. A freaking teaspoon of blood. That's about equal to the amount of blood that we donate to the mosquitoes here on the Gulf Coast in a few minutes. I tried calling the hematologist. They wouldn't see him unless we went to the ER or had a referral. By then his bleed had resolved (prayer works people) and as they say... Keep calm and carry on.
Fast forward a few months to January 2007. Caiden gets tubes put in his ears. He oozes blood for 10 days. There were small blood stains every where that boy laid. His crib, the couch, our bed. U name it... It was stained. Finally the ENT agreed to see us. He didn't believe what I was telling him... Until he pulled a blood clot the size of a pencil eraser out of the little man's ears. Needless to say, we got the referral.... And the diagnosis.
They don't tell you that there is a grieving process. The loss of the idea of having a "normal" child. Initially I felt dirty. Like I had given him a nasty disease. It did, after all, come from my gene pool. My husband never blamed me and that helped. But I felt like a defective mom. One that gave him Hemophilia. I remember waiting until he went to sleep then I would hold him and sob. The kind of snotty, heart broken cry I assume most moms cry after learning of their child's disorder.
January 10th 2007 our family joined a club I never wanted to be a part of. A club of parents who shove needles into their kids chest without blinking..a club of members who wake to blood spots on their sheets. A club of amazing people that realize at some point that things could be much worse.
If I could take away his hemophilia, I would. But I wouldn't trade it for another disorder or disease. All it takes is one trip to the Hematology/Oncology floor to make you realize how good you have it. The bald kids hooked up to chemotherapy will change your attitude quick.
It's taken me 4 years to put this story into words. But I felt it was important to do so. Things are much easier now. I have made some amazing life long friends because of his diagnosis and things are very manageable. Hemophilia doesn't define who he is or will be. It's an inconvenience and a pain in the ass. But for the most part, it is very manageable. We have our bad days. But most of the time, it's only a faint program running in the back of my mind. We have a plan and that's all we need. An ice pack and factor infusion usually go a long way. I thank God often that he survived his circumcision, scalp clips, traumatic birth, and surgery without one major complication.
I used to dwell on how Caiden's future would be affected and didn't take the time to enjoy the present. We teach him that, yes, he has Hemophilia, but so what. We allow him to take small risks and test his boundaries. We allow him to be a boy. Bruizes and all....