By Laveane Lovelady, Damascus, AR
This story is about me, but it all started when my son Ryan was born August 15, 1989. It was after his birth when I was finally diagnosed with mild Hemophilia A, because he was diagnosed with severe Hemophilia A.
My blood pressure had gotten dangerously high during the last few weeks of my pregnancy with Ryan, and I was put on bed rest. After two weeks of complete bed rest and getting my blood pressure checked every day, the doctor decided to induce labor. That, of course, drove my blood pressure up more, and the fear that I might have a stroke caused the doctor to perform a cesarean section for the birth of my son. I think that was God’s way of protecting Ryan from the trauma of birth, because when my daughter Leigha was born, they used forceps which could have caused head bleeding for Ryan.
After Ryan was born, the pediatrician ordered that an IV be put into his right hand for some antibiotics that he needed. His hand swelled and turned black immediately. The doctor suspected a bleeding problem, because my chart had a list of bleeding episodes a mile long.
All of my life I had bled for long periods of time with the smallest cuts, and I always had a bruise some place on my body. Comments were made to me like, “You take after your grandpa; he would bleed and have bruises on his body for no reason.” My mom and dad would say, “If I had a bruise like that I would know what happened to cause it!” Every time I had a tooth pulled, that night and the next day would be awful due to the bleeding. My parents would take me back to the dentist and he would order a shot of vitamin K. I remember one incident of bleeding for 20 hours after having a tooth pulled, but the unusual thing was the bleeding started about two weeks after the tooth extraction. Doctors would always shake their head and say, “I just don’t understand why she bleeds so excessively; females don’t have bleeding disorders.”
Because I remained undiagnosed as a hemophiliac, I had other life-threatening experiences. When my daughter was 10 months old, I had an ovarian cyst rupture and my abdomen filled with blood. Of course the pain I was having caused a trip to the emergency room, but I was sent home with antibiotics and pain medicine to treat a urinary tract infection. Two days later when I was not any better, I took another trip to the emergency room where I was given a pain shot and told to see my primary doctor the next day. Needless to say, by the time I got an appointment with my doctor and was examined, I could not stand up straight and could hardly walk. During the examination by my ob-gyn, I was told, “If we draw any blood in this vile, you have to go to surgery immediately. You may have to have a blood transfusion.” I began to protest. I had a 10 month old baby at home, I couldn’t afford to be off work, and the blood supply was not safe because this was in the early 1980’s. I pleaded, “We have to have family and friends donate blood before I can have a transfusion!” The doctor stated we didn’t have time for that, and he began giving orders to get me ready for surgery. Within 10 minutes I was in surgery.
The day I was getting released from the hospital, my ob-gyn came in and started talking to me about this bleeding incident. He was very concerned about my safety due to the fact that I had bled so much into my abdomen. He said that he and another doctor had dipped the blood out of my body with a cup. If another half hour had passed, I wouldn’t have survived because of the amount of blood I lost. He encouraged me to make an appointment with a hematologist to be tested for bleeding disorders. To top off everything that happened, two days after I went home the incision began to bleed and a large clot formed which had to be removed. For the next 5 months, I made a trip to the doctor’s office or hospital every day to have the incision repacked.
When I recovered from that, my doctor insisted I make an appointment with a hematologist, so I did. But when I went back to the hematologist for the results, he said to me, “I don’t have a conclusive answer for you. The bleeding episodes you have experienced are not normal and the entire group of tests I ran are abnormal”.
My head filled with questions. I asked, “What is wrong then? Why do I bleed so much? Does this have anything to do with my grandfather having problems with bleeding?” I also asked, “Can I pass a bleeding disorder on to my children?”
The doctor answered, “I’m just not sure what is wrong with you. It may be von Willebrand’s disease, but I can’t do anything for you. But, no, you won’t pass a bleeding disorder on to you children”.
I believed him, I said ok, and I left his office. Nine months later I gave birth to my son. The pediatrician ran a bleeding time on Ryan when he was born and it was high, so the doctor ran another one when he was one week old. It was also high, so he had a letter ready for us to take Ryan to the Arkansas Children’s Hospital for further testing. We took our little boy to the hematology clinic at Children’s Hospital, and one week later we were given the diagnoses of Hemophilia, type A. I cried every day for six weeks.
It has been 19 years since my son was born and “hemophilia” became a household word for the Lovelady family. We have raised our son without too many limitations in his life. The one sport he loves, football, he could never play, but he was able to do everything else he wanted to do. I still sympathize with him when his knees and left elbow swell up and feel tight when he is playing baseball or basketball or when he gets a cut or scrape that will not stop bleeding until he infuses.
Although I have a diagnosis for my excessive bleeding, I don’t have a specific doctor or place to go for help with my bleeding problems. Many women are like me. When we give birth to a boy with a bleeding disorder is when we finally get diagnosed, but that is as far as it goes. We have no regular check ups and most of the time we have to tell the medical personnel how to treat our bleeding episode. My mission is to have hospitals, medical clinics, emergency rooms, doctors and nurses become aware that women are hemophiliacs too, and not just symptomatic carriers. I continue to work in the hemophilia community in my state of Arkansas, because there is always someone like myself, who needs someone to talk to, a shoulder to cry on, or just a friend to hang out with who already knows what having a bleeding disorder is like.