Living with von Willebrand disorder, part 2

Written by Aaron Dennis, November 16, 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.   

Pre-school Nerves – July 2021

In September 2021 Ella starts pre-school. Ugh, just seeing it in writing makes me feel sick, but let’s just temporarily get my head out of the sand and face the fact that in September next year she will be starting actual school…all day… 5 days a week… ouch!  

So, 2 mornings at pre-school, totalling 6 hours a week, is an easy transition, right? Wrong! I’m a nervous parent at the best of times and I do not like being away from my children. I was upset enough when Ella’s sister Leah started. Leah was a confident 2-year-old, who was already a social butterfly by that stage; she had lots of friends from toddler groups we went to and was even used to the pre-school environment because one of our toddler groups used to be held there. While I was hanging around feeling nervous and emotional on her first day, Leah cheerfully waved me off “bye Mummy” and sent me on my way at 9:04am!  

Even without the bleeding condition I feel we have a challenge ahead. Ella is naturally a more shy, reserved child. Even as a baby she would always be happier with us, and while Leah as a baby loved cuddles and would happily have a snuggle with anyone, Ella was definitely more particular about who she went to. Then 2020 happened, the world broke, toddler groups became a thing of the past and even hugs with grandparents weren’t allowed – in terms of Ella’s development, this timing wasn’t ideal. Just as she should have been getting confidence with people, she was suddenly told: ‘we can’t go near people who don’t live in our house because of the silly big germ’ and ‘we need to keep space’.  

As a shielding family due to my husband Nick’s medical history, we really did play by the rules and take distancing to the extreme, so for a long time the girls didn’t mix with other people. They started back at ballet in April 2021 after more than a year away from groups. They’ve also recently started kids football. Although after the first session Ella left in tears due to it being overwhelming and in her words ‘too peopley’, after a few weeks off she chose to go back and now enjoys it. She still won’t interact much with others or the coaches, but she happily joins in with the activities at least. Ella’s favourite is when they set up an obstacle course so she gets to do lots of running and jumping – she’s in her element when she’s bouncing along. We were told that exercise would be good for her joints so we are pleased she seems to enjoy physical things.  

In terms of the condition, I physically feel sick at the thought of her being away from me. She has very rarely been out of the care of Nick or I for long. The thought of something happening and her having a bleed while I’m not there to look after her is horrible. I know we live very close to pre-school and I also know the staff there are good and will call me as soon as they need to, but I still struggle with the thought of her being out of my sight.  

We recently met up with another family who have a child with Type 3 VWD who is very slightly older than Ella. I’ve been in touch with the mum via email for a long time now but meeting in person was a special time – whenever something happens to Ella she is one of the first people I want to tell about it because she is one of few people who can fully understand my thoughts and fears.  

Her daughter started nursery last year and they’ve got an in depth care plan with 1-1 support for her, but we don’t have this. We’ve had a meeting with the managers and discussed a care plan but we’ve not seen a final physical copy. We don’t have 1-1 support, and I think as Ella is in a good phase at the moment (always dangerous saying that sort of thing!), we would struggle to be able to prove that we need it.  

It is daunting to say the least, the thought of her going into a room full of other people and obstacles without me there to watch her. What if they miss a bump or a fall? What if something feels wrong and my shy little lady doesn’t know how to tell them or ask for help? What if they don’t notice a warm or puffy knee? What if she has a nosebleed and the other children react badly and make her feel sad? I know they have done the risk-assessments, and everyone will be trained on her condition and she will be on their radar at all times, especially when doing something with more risk, but having spent the last 3.5 years watching nearly every move I can’t help but feel a little lost and overwhelmed by this next step.  

The staff at the pre-school are brilliant and will take every step they can to ensure she is safe and happy, but not being there all the time for my children doesn’t feel natural to me. She seems excited in her own little way and I’m trying to show excitement because I don’t want her to see I’m broken. In the words I use to her when she is having a bleed: “it’s ok, it’s all going to be ok”. I hope… 

If Carly’s story sounds familiar, why not join our VWD Live event, in Southampton on Saturday, 28 January 2023 and meet others who share similar experiences?

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.