Living with von Willebrand Disorder Part 1.5

Written by Aaron Dennis, November 10, 2022

Carly, 32, lives with her husband Nick in Devon. They have a busy house; with daughters Leah (6) and Ella (4), who has type 3 von Willebrand disorder (VWD), as well as an excitable boxer dog.  

Since Ella was diagnosed, Carly has found it helpful to write down her experiences about coming to terms with her daughter’s bleeding disorder, and how they grow to manage it as a family. Carly has now decided to share some of her journaling with us, in the hope that sharing her experiences is helpful for other families.   

What Does It Mean To Be The Parent Of A Baby / Toddler with Type 3 VWD?

For Ella it means:

– The constant bruises, from everything – whose idea was it to get laminate flooring fitted four weeks before our daughter, Ella, was born?! 

– The comments people make and the feeling that you are being judged – how does someone so small end up with so many marks on them?! People with best intentions offering an “oooh look at that bruise, what has she done now?” Well, chances are I had already noticed it; she tripped over or bumped into something, things all toddlers do but which I spend a lot of time explaining, purely because unlike most children every little trip leaves a mark or a cut. 

– The looks you get when your child is having a minor (for VWD standards) bleed and you have to continue life as normal with blood coming from their nose or mouth and both of you in blood-stained clothing. I can see it too! I am doing all I can to fix it but this is what happens and we just have to get on with it. 

– The anxiety which comes with basically every activity. Soft play is harmless fun right? Of course; I just wish it was softer, lower and that kids played carefully (although that’s not true – I always loved my elder daughter Leah’s wild side in these places, and loved seeing her having carefree fun. But suddenly these places are terrifying for me). 

– Simple things becoming that bit more complicated – routine vaccinations need to be done below the skin instead of into the muscle and then firm pressure needs to be applied for 10-15 mins after…But try holding a wriggly, anxious one-year-old still enough to apply firm pressure for that length of time while she has injections into each limb! 

– The guilt I feel when I realise Ella’s big sister Leah throws herself on the floor on purpose or squeezes a tiny cut she has from a bramble because she sees that I don’t react as much to her injuries as I do when her sister gets hurt. 

– The fact that the reality of life is that when Ella gets a bang to the head or mouth, Leah, at only two or three years old, calmly responds on occasions with “shall I get the ice pack?” And then she is able to locate and wrap an ice pack ready for use – proud Mummy but strange reality. 

– Fear of the unknown. It’s so rare and unpredictable that nobody can tell us what will happen and when. 

– Simple things like new teeth growing through causing gums to bleed. 

– Bloody nappies caused by nappy rash/thrush being a common sight. 

– The logistics of a trip to hospital. We have come to rely heavily on both sets of grandparents to help us through when problems have occurred and we have needed childcare. 

– Being in constant fear of an internal bleed – if Ella starts limping or something doesn’t look quite right, I go into ‘panic mode’. 

– Questioning what I am missing if I can’t stop her crying; that’s a normal parental fear, but it is multiplied when internal bleeds are also a factor. 

– Everyday life balancing a toddler, a baby with a bleeding disorder and an excitable nearly 40kg boxer dog – it’s manic but I wouldn’t change them for the world! 

There are also some positives: 

– We have seen the best side of the NHS. Our haemophilia team in our local hospital and at Bristol Children’s Hospital are amazing and always there when needed whether in person, email or over the phone. They are a great mix of knowledge, honesty, reassurance and humour. 

– Devon Freewheelers Blood Bikes transferring the blood product from Plymouth to Exeter at speed late at night the second time she needed an infusion – we are forever thankful for these volunteer services. 

– I’ve realised that my little family and our extended families are pretty damn amazing and always pull through. 

– What an amazing big sister Leah has become. 

– The support of the ‘bleeding community’ through the Haemophilia Society and online connections with other people affected by bleeding disorders, both in the UK and overseas. It can seem a daunting world at times, and the knowledge of those with experience is invaluable and reassuring. It’s good to know we aren’t alone in this world of new medical terminology and a constantly changing ‘new normal’.  

For the first time, VWD Day takes place in Southampton on Saturday, 28 January 2023.

For the first time, a whole day where time is dedicated to von Willebrand disorder (also known as von Willebrand disease or VWD). Specialist speakers will be on hand to talk through the latest news and views.

Tickets are free to members.