Rebecca is a haemophilia carrier and recently delivered a baby boy up north in regional north Queensland.
Photo: Rebecca
When did you first know you were a carrier of a bleeding disorder?
I officially knew I was a carrier of haemophilia A when I was pregnant with my first child. That was my choice. I knew that it was a likely possibility for a long time before that, as both my brothers have severe haemophilia A and I personally was a bit prone to bruising.
How did you find out?
I first learnt about the possibility of being a carrier when I was 11. Growing up I always attended my brothers’ HTC outreach clinics and this particular year we met the HTC Director. He was the first one to explain what it meant to be a carrier. Up until that point I hadn’t considered how haemophilia could affect my personal future separate to my brothers. From that discussion I decided not to test myself until I was actually having children.
My GP was the perfect person to oversee my pregnancies because he also looks after my brothers and does a lot of obstetric work in our town. So as soon as I knew I was pregnant he tested my FVIII (8) protein levels so we could plan for the birth.
When has it been most relevant for you?
For me personally, knowing my carrier status has only been relevant for pregnancy but I have no medical history outside of that.
How did you prepare for your pregnancy?
Knowing the carrier status was useful when it came to preparing for the birth and we had a very well-planned labour. A lot was put in place before our son was born, which I thought was great. We did not know however that he was a haemophiliac until after he was born because I chose not to have any foetal testing. My husband and I felt that the risks did not out-weigh the benefit of knowing in our specific context and birthing history.
I often wonder if other carriers feel daunted by the conversation that their child may have a lifelong condition with their future partners? I felt it was such a vulnerable place to be, yet an extremely important part of preparing for pregnancy. I think it was valuable to my husband that he knew about it very early on in our relationship. I also tried to check in on him throughout the thick of it. Pregnancy, labour and fatherhood can be just as daunting for new dads let alone when there is all this other stuff to learn and consider.
I found that the challenge as a pregnant carrier in regional Queensland was planning for birth. Small town hospitals do not feel equipped to manage the birth in the event that something could go wrong. The convenience of birthing close to home is not an option. You need a large support network because for us it meant relocating before the due date – I stressed everyone out and didn’t move until 38.5 weeks and for reference my son was born 40 weeks 5 days, haha! The logistics of travel from my local town to the regional city had a lot of variables and the roads are in a terrible condition at the best of times let alone labour. And I had lots of people on standby to help with our daughter.
