Haemophilia is a genetic (inherited) condition that affects the blood’s ability to clot. If you cut yourself, proteins called clotting factors combine with blood cells called platelets to make the blood sticky, so that the bleeding eventually stops.
However, in cases of haemophilia, there are not as many clotting factors in the blood as there should be, so a person with the condition will bleed for a longer time than usual.
Helen Batchelor, whose son Samuel has haemophilia, says that children must be allowed to be children, regardless of their condition.
I already knew I was a carrier
When my brother was diagnosed as being a ‘mild’ haemophiliac, I had to
have tests to see if I was a carrier. It was important to know this because
a carrier has a 50% chance of having a son with haemophilia and 50% chance
of having a daughter who will also be a carrier. Luckily, since my brother’s
condition is mild we knew that any son I had would not be any worse off
than that.
My children could have been tested at birth by blood taken from the cord
and, if I have any more children, I will do this. However, Samuel was
tested at around 15 months. He had blood taken and he, like me, was diagnosed
from that.
Samuel doesn’t have many day-to-day symptoms
As a mild haemophiliac, Samuel doesn’t have many day-to-day symptoms.
If he cuts himself, he may bleed a little longer but not faster (which
is a common belief!). He bruises more easily and is more prone to nosebleeds.
Most of the bumps and scrapes Samuel has are superficial and get better
the same as any other child. However, occasionally he has some that are
worse, where he will bleed inside his joints. When he was little I would
be able to recognise when this had happened from him not walking properly
or not being able to raise his arms fully.
When I first found out that Samuel had haemophilia, I became very overprotective.
I watched him constantly and tried to stop him doing anything that may
be a threat. However, it quickly became clear that you cannot do that.
Children have to be children. We have been advised to keep Samuel away
from contact sports. It is unlikely that Samuel will be able to play rugby
or contact karate. He does play football though.
Holidays require a lot more planning as I need to know where the nearest
haemophilia centre is. As yet, we haven’t taken a holiday abroad and I
assume that will take a lot more planning!
Samuel knows he has haemophilia but doesn’t take a lot of notice of
it, to be honest! He had some sessions with an excellent nurse from the
St Thomas’ Haemophilia Centre which explained a lot to him. We had these
sessions to try to get him more used to his injections. As it’s always
been a part of his life, he doesn’t really think about it much but, because
he only suffers mildly and, therefore, is not having ‘regular’ injections,
it becomes a problem when he does need treatment.
If you are a parent of a mild haemophiliac don’t be fobbed off that it
is only mild so not that important. Every level of this condition provides
its own problems but I do feel that ‘milds’ are often pushed to one side.
We have to deal with spotting problems and with a child who is injected
on demand.
Find a way of telling your child how important it is for them to tell
you when things are hurting and there might be a problem. I took Samuel
to the hospital as he was having bad nosebleeds. They did an all-over
check whilst we were there and we mentioned he had a slight pain at the
top of his leg. It turned out to be a bleed (this word is used to describe
when the blood isn’t clotting and is causing a problem in a joint etc)
and there was a possibility that the swelling could damage the nerve to
his leg. He needed to start on a immediate course of treatment to help
the blood to clot and was on complete bed rest for nearly three weeks.
To avoid us being kept in hospital, and also to avoid the trauma of Samuel
having constant injections, a ‘line’ was put into his arm and I had to
learn how to put the treatment into this line.
I use this situation to tell Samuel how important it is for him to tell
me if anything is hurting (or ‘fizzing’ as he describes it!).
It is also natural that you feel guilty if you’ve missed the symptoms
of a bleed. Don’t – it’s so hard to tell with a mild haemophiliac when
there is a problem.
- For more information on haemophilia, visit www.haemophilia.org.uk
- To talk to other mothers who have children with special needs, visit our forum
- Take a look at our articles on special needs
