- Prophylaxis treatment helps the blood to clot and minimises the likelihood of bleeds and risk of long-term complications.
My name is Rosie, I'm 34 and live on the Isle of Wight with my
husband and our two sons Archie, 7 and Louie who is 3. When Louie was
8 months old he was diagnosed with severe haemophilia A.
To say Louie's diagnosis turned my world upside down would be an understatement. Everything changed, even things you wouldn't imagine. But it was my mental health that took a real battering, especially in the early days after diagnosis. Haemophilia is normally hereditary, but this wasn't the case for us. In fact, I had never even heard of it before we got the phone call with his blood test results. We have what is known as a 'spontaneous mutation' and in our case that started with me. I am a carrier of haemophilia and passed it on to Louie.
Having carrier status made things even tougher for me I think, the guilt was sometimes unbearable, after all this was technically 'my fault', I had given this to my innocent little baby. Of course, that is absolutely ridiculous as I had no idea, but the guilt is still there. I think as well it made me feel responsible, not just for causing his condition, but then for making sure he was as safe as possible. I took that weight all on my shoulders if I am honest. It wasn’t that anyone didn’t try to help, it was that I wouldn’t or simply couldn’t let them.
Having a baby and toddler with haemophilia is hard, Louie learned to crawl, walk and run while not on any prophylaxis treatment and having zero understanding of the situation. I spent a lot of time on edge, didn't like anyone else looking after him, feeling guilty, scared and actually just overwhelmingly sad some days. I also suffered from reoccurring nightmares and had physical symptoms like bad skin and fatigue. Everyone told me that things get easier and they are completely right. They really do. Children get less clumsy and begin to know they boundaries and gain spacial awareness. They also stop running around with their eyes closed or walking backwards! Thankfully!
Another huge milestone in the life of a severe haemophiliac is starting prophylaxis treatment1. For me, the prospect of starting treatment actually gave me mixed emotions - of course, I was relieved that he would finally have some protection against what I was increasingly seeing as danger round every corner. But I also felt overwhelmed, overwhelmed at the prospect of this being our lives now, this being our new forever and also at the prospect of learning how to administer medication. These feelings actually didn't last as long as I was expecting. The relief did, but feeling overwhelmed didn't. Louie is 3 now and responding well to prophylaxis. And it really has just become a part of our lives. Not a part I enjoy or look forward to, but something we have to do and get done because he needs us to. And at the end of the day, we all just want to give our children the best lives we possibly can. Louie also now goes to nursery which is something I never thought would be possible. But with a lot of education and ensuring his nursery know exactly what to do in an emergency he is able to go and enjoy himself just like his brother did and like most other toddlers are able to.
Anxiety is something I still suffer with often, situations still make
me feel uncomfortable and I'm not actually sure if that will ever
change. But what will change is his understanding of his condition and
his ability to make decisions for himself. I'll always be there right
by his side for whatever he needs but him finding his own boundaries
is such an important part of growing up.
I have also learnt a few ways to keep my anxiety at bay and I wanted to share my 5 top tips for any other parents who might be feeling in a similar way...
1: Ask questions
There is no such thing as a stupid question! I always take a notepad and pen to every appointment bursting with endless questions for our consultant. And by writing down the answers I'm able to refer back and make sure I remembered what she said correctly.
2. Say no
It’s OK to not do something if it makes you uncomfortable. The truth is some situations are daunting and if on a particular day you don't feel like doing an activity or going to a certain place that's fine. Don't do it, don't put yourself through something. Your little one won't know and you might feel totally ready for it another day.
3. Baby proof!!
This one is a little controversial as some people say you shouldn't baby proof. But for me in the early days it was a must. Also, if something can help with safety while helping with your anxiety what's not to like?
4. Take things day by day
Or month by month, but don't look too far into the future. Worrying about things that may or may not happen in 10 years’ time really is a waste of energy. Channel that into navigating scenarios in your immediate future. Things that once terrified me - starting nursery, moving into a proper bed, baby groups, stairs, I could go on and on, all actually developed without as much concern as I expected. Oh how I wish I hadn't spent endless nights awake worrying he would never go to nursery!
5. Find other people going through the same thing
Being a parent of a child with haemophilia can be a lonely place, I guess like any rare condition it's unlikely you'll know anyone else going through it but social media is a fantastic tool for finding other parents to connect with. Instagram and Facebook are full of amazing accounts and support networks so get searching!
I really hope these are helpful to anyone reading and I think above all we all need to give ourselves a break once in a while. Remember what we are all taking on as parents is tough, but positivity and talking things through is key. It's also so important to remember that Haemophilia is something our children have, it doesn't define them as people, or us as parents. Keep your mind clear, positive and if things get too much find another parent to chat to. Chances are they will have been through the same. Remember, you're never alone.