Glen, Jan, and their daughters are members of the Australian bleeding disorders community
Glen and Jan, parents of two daughters who carry the gene causing haemophilia and have bleeding symptoms, talked to Suzanne O'Callaghan at HFA
Glen had always known there was haemophilia in his family. He himself has haemophilia, and he was aware of at least two uncles who also had haemophilia – one was a policeman and died of bleeding after being shot in a raid in the 1940s. There were 14 children in his mother’s family, and 6 died young of causes that were never explained.
But it was not until his two daughters showed signs of bleeding problems that he started to join the dots on bleeding and haemophilia among women in his family.
“People didn’t talk about these things then – and we didn’t have the tests that we have now,” commented Glen. “When I was about 13 or 14 we presume my mother had a hysterectomy or curette – nothing was explained. She went to hospital to have the operation and had so many bleeding problems that it was 6 weeks before she came out.”
There were other indications of bleeding problems – bleeding for 6 weeks after teeth extractions, massive bruising and swelling when she broke her arm.
Glen was part of the first generation to receive clotting factor concentrate rather than whole blood transfusions and always liaised with the Haemophilia Centre to manage any bleeding issues that might occur during surgery. So it seemed a natural course of action that his daughter should be tested before she had a tonsillectomy when she was a small child. But the results changed his understanding of haemophilia completely.
“It was a pretty big shock,” he said. “We went to see the doctor at my Haemophilia Centre before we had children and understood there was a possibility our daughters could be carriers, but it was thought they definitely would not be ‘bleeders’.”
At 3 years of age, their daughter Sharron had factor VIII levels of 17% – in the range for mild haemophilia. The haematologists were not happy with the result and decided that her tonsils should not be removed.
Her sister was tested later at about age 3 and was also found to have low factor VIII levels like Sharron.
Growing up as a female with bleeding problems had its share of difficulties in an age when it was a commonly held belief that boys had haemophilia and girls could carry the gene, but wouldn’t have bleeding problems.
Bruising could be a big issue. Jan described a single occasion when she tapped her daughter as a toddler (“she was angelic normally!”), and the bruising that resulted was so terrible that it looked like she had smacked her very hard. Alarmed, she rang a friend who was a nurse – not wanting to visit a doctor in case the doctor thought she had been abusing her daughter. Even then her friend told her not to worry, as “she couldn’t possibly have haemophilia”. The bruising remained a mystery until her daughter’s factor levels were tested.
With their low factor levels, their mother also realised that menstruation could be a concern for her daughters and that she would need to monitor this. “I needed to talk to them about how their periods were going. I was worried that they might bleed to death!” said Jan. With a teenager’s natural reserve about anything to do with their bodies, this could sometimes be an awkward conversation – preferably avoided, from at least one daughter’s point of view.
However, for both parents, the hardest challenge was the attitudes their girls encountered at school.
“People would not accept that the girls had bleeding from haemophilia,” said Glen.
At the beginning of every year Jan would go to the school and brief the girls’ teachers and have to manage their disbelief – a painful experience. It was compounded by the bullying their daughters had to endure. Doctors’ children would tell the others in the class it was not possible for them to have symptoms of haemophilia.
In the mid-1980s HIV swamped the media and the girls found themselves in the middle of the fear and discrimination that occurred during the Grim Reaper campaign. In haemophilia, HIV was a hit and miss lottery. Both daughters were lucky enough to escape infection through clotting factor products, but other young people they knew were not so fortunate. At school the talk among some students was that the girls had AIDS. This time teachers were proactive – even challenging the students in the class to find out their own HIV status – and the whole issue settled down quickly… but it was hard to forget.
The girls have each had their own approach to life, but independence and resilience has been a strong feature of both. Working with horses was a big part of their family life – and fitness and exercise. Their parents encouraged them to ride horses. One in particular was very keen on riding, and her father made sure her horses were reliable and that she took care of her legs. Persuading them to take haemophilia into account with playing other sports was more of a challenge for their parents, with one daughter prepared to stop playing sports that were problematic, while the other preferred to go ahead and just take the bruises and sore patches as “an everyday thing”. At school they had always wanted to sort out the bullying themselves, and their parents are uneasily aware that there were other episodes they were never told about.
As adults, the lessons and confidence Glen and Jan’s daughters learned from dealing with the bullying at school stand them in good stead when they need to speak up for themselves or for each other. Their parents have watched their growth and are proud of their daughters’ ability to support each other and make things happen – for example, when one was struggling with a bleeding complication at a hospital, the other advocated for her until she was transferred to the Haemophilia Centre.
And what they have learned as parents of daughters with a bleeding disorder?
Glen explained that seeing your children’s pain can be difficult. “It can be pretty hard as a dad, but it’s something you just have to bear. It’s something that is not going away, so you have to go through it, and do what you can for your children.”
For Jan, connecting with her local haemophilia foundation and finding someone who is in a similar situation was critical. “It’s such a relief to meet someone who understands!” she said.
But for both it has been hugely satisfying to see the current education materials noting that some females who carry the gene causing haemophilia can have bleeding symptoms, and that if females have factor levels in the range for mild haemophilia, they can be described as having mild haemophilia. After living through years of denial from the wider community, they now have something to show others that their daughters’ experience is real – “it’s there in black and white!”
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