Our Experience of von Willebrand Disease

The I.H.S. spoke to the parents of a boy with von Willebrands Disease. Here they tell us their story and the impact von Willebrands has had on their lives.


Story 1:
Parents of a boy with von Willebrands Disease

We are the parents of a boy who is five years and 10 months old (apparently the 10months is very important and I mustn’t forget it!) He’s in Senior Infants and is very bright, he has great fun playing with his friends and doing all of the things that five year old boys do. The only difference is he has Von Willebrands Disease and is non DDAVP responsive. It has been quite a steep learning curve, but fortunately we have known about it since he was six months old. I had never heard of it before I met my husband; he has 5 siblings, but is the only one with the condition. He wasn’t diagnosed until he was 10 years old and I am sure that he caused his mum many sleepless nights both before they knew and after!   Thankfully medical advances have meant that we can be proactive with both of their care.

When our son was younger, having Von Willebrand\’s Disease was less of an issue, his environment was more controlled, and he was either with me or in the crèche where they were fully aware of his condition.  Although most of his bleeds have happened before he started school, we have been quite lucky really in that he has only been hospitalised a few times. His first bleed was when he was only about 18months old; he was in crèche, who had been looking after him since he was six months old. He was going outside to the play area, when he fell against the metal railings and hit his face. Fortunately the treatment he received in the hospital stopped the bleeding and he didn’t need any stitches.

I think the hardest part of him having a bleed is making sure that the people around him don’t panic.  As parents we are used to seeing that amount of blood, and he takes it all in his stride. However it is easy to forget how upsetting it can be for caregivers to see it.  So far we have been lucky, but I do think that a lot of it is how you deal with it yourself. I always take great care to play down a minor bleed, although to those not used to children with a bleeding disorder they never look minor!

It was a totally different situation when he started school though, I felt like I was totally out of the loop.  After all it was such a controlled environment in the crèche but not so much in schools, especially with all the bigger children around. So I was a little panicky to start with and it took me a while to adjust. We thought long and hard about which primary school to send him to, we were in the fortunate position of being able to choose between several. The school we chose is a rural school with around 200 pupils.  All of the teachers, including the head teacher know each pupil and I felt he would be looked after there without being micro-managed or worse being just a face in the crowd.

The first thing I did was to inform his class teacher of his condition and what it actually meant on a day to day basis, which fortunately is very little.  The literature available from the Haemophilia Society for schools was brilliant; it explained everything simply and without causing panic. He hasn’t yet had a bleed at school and I do worry about that in case the staff panic, or don’t recognise an internal bleed. The only comfort I can take is that I have provided them with all the information available, I know that this has been distributed through to the relevant people and places. This combined with the fact that I have prepared our son with as much information about recognising a bleed and what he should do, gives me some peace.

The only really scary bleed he had was when his tonsils began bleeding when they became infected.  At the time we didn’t realise he had such a bad sore throat, and until we spoke to Dr Nolan, his consultant in Crumlin, we weren’t aware of how potentially dangerous it could be. We were transferred to Dublin by ambulance and to his disgust my son slept the whole way and missed the sirens and flashing lights! Now he only has to mention his throat is sore and we are straight off to the doctors to get it checked out!  Although we have been very lucky and he seems to avoid picking up most bugs going round the school.

What we didn’t realise, or rather what didn’t sink in, was the amount of preventative work we have to do for him.  For example he has to see a dentist every six months as we have to try and avoid any unnecessary work being done. I have to be extra vigilant about him getting flu vaccines and his standard vaccines because of the way they have to be given.  I need to make sure that I am with him when these are being administered to ensure they are given correctly. It is added stress on top of being a parent and can become overwhelming sometimes. It can also lead to being questioned by doctors and nurses about the condition and they can sometimes question your intentions, so it is very important to be knowledgeable about the condition and also to have confidence in that knowledge.

However, to be honest, most of the time, I don’t really think about it. We make sure that he wears a medical bracelet with his details on it when he is away from home, with or without us. Thankfully there are so many different types now, including ones specially designed for children, which makes it easier to get them to wear them. I am more aware that as he is getting older, the chance of a serious bleed is more likely, he’s a very active boy and tends to be quite impetuous and tends to act before he thinks.  He would rugby tackle his 14 year old cousin not a problem!

Although I’ve said that I don’t think about it too often, subconsciously I am quite protective of him, and rarely leave him, except obviously when he is at school. He has started attending birthday parties and I mostly stay with him, unless I am confident that the parents know all about his condition and are responsible enough to deal with any potential accidents. I feel that it is quite a big responsibility to hand over to someone who may not really be that interested in the welfare of your child.

Having said all of that I do look at the fact that each bleed or new experience that happens increases our knowledge and this in turn helps us to cope with any new situations that may happen. It also gives me more confidence in dealing with the medical profession. I think that as parents of a child with a bleeding disorder you have to remind yourselves that you are the experts in this situation and you know what’s is best for your child. This can be quite difficult, especially when you meet those who ‘always know best’.

I do think that one of the hardest parts of having a child with von Willebrands is that there are no obvious signs that there is anything wrong with them. This has lead to strange looks when swimming due to the amount of bruises he has, to being questioned by locum doctors about how he gets bruised. Thankfully I have developed quite a thick skin and no longer mind it.

We do find it difficult sometimes though, because we don’t know anyone else with von Willebrands.  It would be nice to be able to share experiences, whether it is how to handle explaining that they aren’t able to play contact sports or just being able to talk about day to day life.

I do worry about how he will deal with having Von Willebrand\’s Disease as he gets older. His dad rebelled against not being allowed to do anything physical, so I am more conscious of not stopping him doing everything he wants to do.  I just either place conditions on what he is doing, or watch him like a hawk.  Even now I worry about him being caught up in fights at school or something as simple as being pushed.   He has already had many close calls at school, and seems to come home with new bruises each day.  As it is now, I can check him over myself without it being too obvious at the moment. I can only hope that by educating him on his condition, making him aware of what a bleed will feel like, that he can take responsibility for himself.

It is hard not being near a hospital with specialised facilities, Our Lady’s Children’s Hospital in Crumlin is over 2 hours away and Cork would be over an hour away. I would have no problem in travelling to either of these, but the stress of there being an active bleed would not make it a very safe journey. It would be nice to see some kind of specialised training at the larger regional hospitals.  I guess only with sharing our own experiences and being proactive with medical care, we can improve the level of care our families receive.  I just take comfort in the fact that there have been medical advances and this will continue thanks to the hard work of organisations such as the Haemophilia Society.