A week before baby was due, we found out Blondie has hemophilia.
I feel like that is a rather straight forward statement, and I am surprised I can say it so easily, but truth be told, it was a relief to find out what was going on.
He has always bruised easily and has had lots of bruises, but initially we weren’t that concerned about it. When he was 18 months old, he broke his leg, and because of his bruising they did some blood work, but it all came back normal. We had an appointment with a pediatrician to inquire about bleeding disorders, but in his opinion a bleeding disorder was unlikely.
Up unto this point, Blondie had had bruising, but no cuts of any sort. Since that appointment he had cut his finger, then cut his forehead in a fall, and bit his tongue twice, and all of these injuries took a long time to heal and required stitches to finally heal properly. We decided we needed to pursue this further when he had a mosquito bite that “dribbled” blood after we swatted the bug away. That most certainly wasn’t “normal”.
So we went back to the doctor’s and were referred to a hematologist. The first appointment was for blood work, with an appointment to discuss the results roughly a month later. My husband took Blondie into the city the day before for the blood work (we live 3 hours away from the hospital), and they were back the next day by noon. Just over an hour after they got back, I got a call from the doctors office saying that they wanted us back the next day to talk about results. At this point my heart was racing and I was jumping to worst-case-scenarios. I asked, “That’s not good, is it??” to which the nurse responded “Well, it’s not like you have to take him to the emergency room or anything, but the doctor wants to see you right away”. That’s all she said.
And did I mention that these appointments are all through the cancer department of the hospital? That does absolutely nothing to set ones heart and mind at ease…
Hanging up the phone, I fell on my knees. As I prayed through the sobs, I knew God was in control, and I fought against the fear that wanted to take over.
The next 24 hours were the longest, hardest, scariest hours I have yet lived.
I first called my husband at work and he cancelled his schedule for the next day and came home early. Then we waited. We prayed. We made it through a restless night. Driving to the city that morning my nerves were fried, and then getting to the office we had to wait some more.
When we were finally called in and thought the wait was over, we were stuck with the resident doctor and had to answer a million questions before we even saw the doctor. Once the doctor came in, he quickly got to the point and told us Blondie has hemophilia.
We were surprised.
I remember feeling very stunned.
Since the diagnosis, I have read the stories of other parents finding out their sons have hemophilia, and compared to their experiences ours wasn’t nearly as traumatic. This is for several reasons. One is that he does not have sever hemophilia, he is a moderate hemophiliac, therefore, his symptoms weren’t as bad as they could have been. Second, we knew something was wrong, we just didn’t know exactly what it was, so we were expecting a diagnosis, we just weren’t expecting this.
So what is hemophilia? Hemophilia is a rare bleeding disorder (only 3500 in Canada) in which ones blood does not clot properly. There are two types, A and B, with A being the more common of the two (Blondie has hemophilia A). It is caused by a defect in one of the genes that determines how the body makes clotting factor. This defect results in hemophiliacs having less or no clotting factor (factors are steps in the clotting process). Missing or having less factor (factor 8 for hemophilia A and factor 9 for hemophilia B) means that Blondie bleeds longer than usual because the clotting process cannot be completed properly. He doesn’t bleed more than someone without hemophilia, just longer. It is an inherited disease, but because we have no family history we will be getting some genetic testing done to see if I am a carrier (only women are carriers) or to determine if he has a new mutation (about one third of hemophiliacs are the result of new mutations also known as acquired hemophilia).
I could go on and on with the information we are learning, but I’ll save that for later…
So we are here, now knowing, and working through what that all means.
We most certainly would greatly appreciate your prayers for wisdom, health and discernment in dealing with this condition.
We know that above all, God is in control and knows Blondie has hemophilia and that He is in all things. We aren’t worried about that, but we truly desire our son to know Him and know that God doesn’t make mistakes. We have a long journey ahead of us, but have a peace that carries us.