A BIT MORE ABOUT MYSELF

Just thought I'd take the time to tell a bit more about myself from the beginning. My name is Michelle and I was born with a rare congenital blood condition called Afibrinogenemia and secondary platelet dysfunction. I come from a family of 5 siblings, 2 brothers and 2 sisters. My mom did have her first baby, a girl when she was 6 & 1/2 months pregnant but she only lived for a few hours. It was suspected she had the same disorder that I have. My oldest brother Eddie also had the same condition but sadly he passed away from a brain bleed in April 2008. No one else in any of my family history has this condition, but both my parents had to be carriers. My father did have a platelet problem but was not properly diagnosed before he passed away several years ago. During my childhood, I had too many visits to the hospital to count or even remember. The only memories I really have are from my hospital records. As I young adult I had my first serious bleed at 18 where I lost 2000ml of blood from a ruptured ovarian cyst. When I was 24 I suffered a light stroke from a brain bleed. Fortunately the only side affects from the stroke are minor numbness in my left arm. Over the course of several years till now I have had about 7 other ovarian cysts rupture. They were all very painful but nothing compared to the first one, where my family didn't think I would survive. Other than that I have suffered numerous joint bleeds and swelling in different places from injuries. I have always struggled with the fact that I may never have children, and trust me that has been very difficult for me. Because my blood disorder is so rare there is just not enough documented history for the doctors to go by. So I received different opinions from different doctors. Some said it would be possible with fibrinogen replacement and some doctors said no, it was to dangerous to attempt a pregnancy. Anyway I probably would miscarry without treatment between 5 to 6 weeks. Most people don't even know they are pregnant at that time. Needless to say I felt like it was a lost cause. Then in August of this year I started having swelling and pain in my abdomen. I knew from the start that I had another bleed from a cyst that ruptured. I went to the hospital early one morning cause I could no longer take the pain. Sure enough I had loose blood from a cyst again. But God must have been looking over me because on that same day I found out I was pregnant!!! That day they started my treatment as a precaution until they got confirmation it was a viable pregnancy. I had a scan later that day to check the bleeding and the pregnancy. There was a gestational sac which they estimated me to be 6 weeks pregnant but there was no baby yet. After a few days in hospital I was discharged with an appointment for a follow up scan. After one week I went back for my next scan to find out there was still only a sac but no baby. My hcg levels were going up and the sac had grown but nothing more. The doctor sat me down and spoke about molar pregnancies. At the point I was very upset that the baby might not develop. Once again I went home with no answers, but still being treated with fibrinogen as if it was viable. After one more week I went for my next scan, and there he was with his little heart beating away. Words can not say how happy I felt. At that time they dated my pregnancy at 6 weeks, it was just too early in the other scans. Since then things have progressed normally in my pregnancy. I have gone from getting my treatment in hospital (1 bottle twice a week) to treating myself at home with 3 bottle three times a week. It has gotten to the point that things are changing the later I get in pregnancy. I have had a couple of stays in hospital. One day I was at the hospital waiting to get my treatment when I passed out for no apparent reason. The landed me in hospital for 2 days for observation. The other time I was having pains in my stomach so again was admitted for 3 days for observation. Both stays turned out to be fine. About a month ago my doctors decided to install a Hickman Line (central line) for my treatments. My veins were starting to blow very easily and I had resorted to sticking myself in the feet 3 times a week to access a vein. With the central line I have instant access to a vein. My doctors feel more confident with this line in place, that way if I come in with an emergency or bleeding they can start me on a transfusion straight away. The actual procedure was not that bad. I had a local anaesthetic and only a couple of stitches. It was very sore for a few days after but is fine now. So far during my pregnancy I have had about 9 scans and have them every 2 weeks or so. At one of my last scans they discovered the baby's head is already engaged. On that day they decided to give me the fetal fibronectin test. This is to see if I could go into labor in the next 2 weeks. It came back as positive, which meant I have a 50/50 chance of going into early labor. We spent the day talking to different specialists, viewing the NICU and getting the steroid shots to help develop the baby's lungs. It as been nearly 2 weeks and nothing has happened which is a blessing. I will find out at my next appointment if the risk still remains. It was decided however because of my blood disorder that my baby will be delivered early at 34 weeks. So either way he will be premature, just depends on how early as to how premature. With gods grace he will stay put as long as needed for him to grow strong. My fibrongen consumption has started to go up quite a bit. I am currently on 4 bottles on Monday and Wednesday and 5 bottles on Friday. I have weekly appointments with haematology to test my fibriogen level and weekly appointments with my OB and midwife to keep an eye on things. Thanks so much for everyone's continued support especially my family. Also I want to thank god for watching over us and for everyone's prayers as we continue on this unknown journey.