My Dad has haemophilia, so when I became pregnant with my first son, Cassius, in 2003, I knew there was a 50/50 chance he would have haemophilia too. Cassius was tested at eight months old and the results confirmed he had moderate haemophilia A, just like my Dad.
At first I felt a little sad, but the truth is, I knew very little about the condition, and, looking back, my Dad wasn’t really the best source of advice, as care and treatment is very different now.
At ten months old, Cassius fell and cut the inside of his mouth. After 14 hours of continuous bleeding I took him to our local children’s ward where we had open access. Seeing Cassius have his first dose of factor VIII was one of the worst experiences of my life: he was hysterical and had to be held down and injected.
I felt so helpless, and broke down. Thankfully, my dad was with us, and calmly whispered in Cas’ ear that it was all going to be OK and he would soon taste the factor on his tongue.
During his first five years, Cassius had various bleeds and hospital trips: it got easier each time. Whenever I suspected a bleed, I would call my Dad, who would reassure me:
‘See how it goes Hannah, I’ve lost count of the times I’ve had a bleed like that and I don’t treat them. He will be fine’. That was how my Dad had always managed.
12 days after Cassius’s fifth birthday I gave birth to another son, Jonny.
A new consultant said that Jonny could be tested at birth, rather than having to wait months to find out. It may sound strange, but I so hated the thought of Cassius having to watch his younger brother doing things he couldn’t, that a part of me secretly hoped Jonny would also have haemophilia – which he does.
Under the guidance of our new consultant, we were advised to get all head injuries checked and to treat all joint bleeds immediately. I felt very foolish and ashamed at the times I had put Cassius at risk.
Jonny has also had his share of bleeds. The worst was a knee bleed requiring three weeks in hospital – especially tough as Jonny was needle phobic and found treatment very traumatic.
The biggest change in the way I manage my two sons’ haemophilia came when Cassius knocked out his two front teeth during a family holiday in Egypt. After four days of bleeding, and with treatment waiting for us at the centre when we landed, we were not allowed to fly home for another two days because of the bleeding! It was a very frightening experience for us all, and I was very grateful for the haemo families Facebook group which had made me aware of the special travel insurance available.
Two years ago, after speaking to The Haemophilia Society and other families, I approached our consultant to request support with home treatment and to take on holiday.
With the help of our local centre and children’s ward, I am now able to treat my boys at home, in the knowledge that we can still go to hospital when we need to. Jonny was referred to a specialist and no longer has a fear of treatment.
It feels wonderful to be in control and I feel I’ve come so far from the helpless, hysterical mess I was during that first bleed. We now receive disability living allowance, and have much more support from our local centre. My sons are both fit and healthy, and the future is looking great.
I’ve volunteered to chair the newly-formed Bournemouth & Poole local group, and hope to use our family’s experiences to help other people in our area.