These days, most people with haemophilia can expect to live long and fulfilling lives as a result of advances in treatment over the last 40 years. There will be many exciting milestones along the way – and the good news is that, while haemophilia can’t be ignored, it doesn’t have to rule your life!
Babies born with haemophilia should not be treated any differently to other babies. As with other newborns, they should be handled gently and lovingly. It’s also important that you have access to a Haemophilia Treatment Centre, who can provide you with information on immunisations, teething, and how to deal with bumps and bruises if they do occur.
This is an important time for you to come to terms with your child’s diagnosis and learn about haemophilia and how it can be managed. Your Haemophilia Treatment Centre can help you with this, and will likely become a great source of support to you over the years.
It’s important to remember that although your child has a rare condition, you are not alone. There are many families in Australia, just like yours, who are dealing with the effects of haemophilia. You might like to ask your Haemophilia Treatment Centre whether they can put you in contact with other people in your local area who are going through similar experiences.
Toddlers and pre-school years
This is a major exploratory phase for all children, whether they have haemophilia or not. While it may make parents nervous, learning how to play and interact safely with other children is important for any child with haemophilia. And despite a parent’s best efforts, accidents are likely to happen from time to time. However, in the long run, it is better that a toddler is brought up not to fear their environment or to feel like their condition makes them ‘abnormal’.
Superficial bruising is very common in toddlers and pre-school aged children with haemophilia, although bleeding into joints in the first three years of life is unusual. Bleeds at this age usually occur as a result of a bang or fall. If there is ever any doubt about bruising or the possibility of a joint bleed, contact your Haemophilia Treatment Centre. They will help you learn how to manage your child’s condition as they grow.
Starting school is an important milestone in any child’s life. It’s an exciting time for everyone, but like all children, there may be some challenges along the way. The important thing to remember is that with the right information and planning, and the support of others, your child should be able to successfully navigate their way through this important phase of their life. You can find more information on how you can prepare for your child’s first day of school here.
There is often a lot of pressure to fit in at this stage of life so teenagers with haemophilia may sometimes feel frustrated by their condition, and resent the fact that they are different to their peers. On top of the usual demands of adolescence, teens with haemophilia must also begin to take over responsibility for their condition and its treatment. This will enable them to successfully transition to self-management in adulthood.
Teenagers are also known to explore new things, and in some cases this may involve making decisions about drugs and alcohol or getting tattoos and piercings. For teenagers with haemophilia, it is important to fully understand the risks associated with these kinds of activities.