Self Infusion is an important part of a person with haemophilia’s life. Self infusion is when a person with haemophilia gives treatment (factor) to themselves, through a Freddie or more commonly a vein.
Before starting self infusion, a child with haemophilia is entirely dependant on some one else to get their factor. They are either unable to go on school trips or outings or one of their parents may need to go with them on every trip. This can lead to a lack of self confidence or even frustration as they just want to be like their friends. When a child starts to self infuse it is the next stage in them taking control of their haemophilia. They can now take care of themselves and that creates a feeling of independence and confidence. Self infusing for the first time, can bring fear which is quickly overwhelmed by pride and happiness. Starting self-infusion can be daunting for parents and children, especially when things are going well as they are.
In case you think your child is too young the average age when children start to self-infuse is 7-9 years old, but there have been cases of younger children than this self infusing.
The best advice in relation self infusing is do it as soon possible, when the child is ready.
If your child is not ready to self infuse, try getting them to help you with the process – let them mix the factor etc. This will help them feel more comfortable when the time comes for them to self infuse.
At the 2012 Parents Conference, IHS Staff Member Nuala Mc Auley spoke to the Mary Kavanagh and Eibhlinn Mc Loughin, Haemophilia Nurse Specialists from Our Lady’s Childrens Hospital, Crumlin on Self Infusion.
This is the third year the self infusion workshop has taken place at the Parents Conference for the children. Why is this workshop so important?
MK: Self infusion is the next step in children becoming independent in giving their own factor. The earlier we start it and the more we get kids on board the easier it is to actually train them to do it themselves.
This year saw a self infusion workshop for the parents also, why is it important for the parents to learn about self infusion?
EML: It is very important to encourage the parents to change over to peripheral access as soon as possible. The shift very much has been to try and make them start as early as possible to use the veins as this is the first step in getting the children on board to self infuse. You have to get the parents on board before you can get the children on board.
What, in your experience, are the biggest challenges / barriers in self infusion?
MK: If parents are nervous children are nervous, it is actually easier to work with nervous children than with nervous parents. So firstly we need to get parents on board we need to get them over their own anxieties before we even start to train the kids.
What are the benefits of self infusion?
EML: It is much easier and quicker. It makes the child much more independent. It eliminates all the complications that goes along with a port – no risk of infection, no risk of blockages and no risk of breakage. It is much more portable, less equipment needed for peripheral access than port access. Once your port stops working you are already trained and you are good to go.
Mary, in your session with the Parents you spoke about the Vein Train – how is it going?
MK: The vein train is a training programme we run in OLCHC to help kids and parents become comfortable and confident in using veins for infusion. It is going great we have loads of tickets now, the carriages are all empty.
We have trained a lot of kids and parents, but there is always the option for people to come back. Last summer it was really busy as it was the first year of the vein train so there was loads of people coming at the same time. This year, it is not as busy so there are lots of places if people want to come along just give the haemophilia team in Crumlin a shout and they can set up an appointment to look at your child’s veins. If the veins aren’t suitable for peripheral access we will send you away until next year, if they are good for peripheral access we will start training you and have you up and running as quickly as we can.
Here, eight year old Adam Cox talks to Haemophilia.ie about his experience with self infusion.
My name is Adam Cox, I am 8 years old and I have severe Factor VIII haemophilia.
Last year my mam learned how to give me my factor in my veins. I had a port put in when I was 2 but because I was older and have very good veins it was time to take it out. In January this year my “freddy” was taken out. I was in hospital for a week. Now we use only the veins in my arms and hands.
Sometimes it’s hard and can be sore, but my mam is getting better all the time and I’m helping her. When we find a good vein my mam puts in the needle and i give myself the factor and take the needle out! One day I will do it all by my self but for now I’ll just be a good helper to my mam!!
Adam Cox Ellis self infusing at Members Conference 2016:
Don’t forget to contact the I.H.S. when your child self infuses for the first time and we will reward them with a cert and voucher.
For more information on self infusion please speak to a member of the Haemophilia Team.