I'm the parent of a child living with haemophilia

I'm the parent of a child living with haemophilia

Do you see opportunities before limitations? 

Or is it the other way around? For all parents and carers of young children living with haemophilia, one of the hardest challenges is figuring out where to set the boundaries while still allowing for opportunities to explore, fall and learn. For a teenager wanting to feel like a ‘normal’ kid, the challenge becomes more about slowly learning to take responsibility for their haemophilia care plans. 

And because young people can’t make many of the big (and small) decisions by themselves, you as a mother or father play a vital role in shaping your child’s life. 

Child with haemophilia

A life like any other
in almost every way


Discovering that your child has a chronic illness can come as a shock. But just because an illness is life-long, it doesn’t mean that the future is going to be difficult. Today, haemophilia can be successfully managed with treatment and an integrated team that specialises in bleeding disorders. At first, you will have a lot of contact with this team, but in time, this is usually reduced to around only two follow-up consultations a year.

See opportunities before limitations

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The balance between protection and possibility

As a parent of a child with haemophilia, you need to take a number of things into consideration as your child grows up. Although you may be worried initially, haemophilia can indeed be managed and your child can look forward to a long and fulfilling life. It’s about finding the perfect – and very achievable – balance between protection and possibility.

Protection
 

Avoid injury and bleeds

  • Have a clear routine regarding your child’s haemophilia treatment right from day one.
  • Install safety gates, childproof locks and radiator covers, and attach corner guards to any sharp edges at home.
  • Maintain good oral hygiene to keep teeth and gums healthy, making it less likely for the gums to bleed or for your child to need dental surgery.
  • Avoid intramuscular injections as they can cause muscle bleeds.
  • Use paracetamol for pain relief. Other painkillers are harmful for people with bleeding disorders because they can interfere with blood clotting.
     

Utilise healthcare professionals

  • Inform your dentist, family doctor or other members of the healthcare profession that your child has haemophilia.
  • Give your child a ‘bleeding disorder alert card’ with their diagnosis, blood type, current medication and the telephone numbers of their care team.
  • Do not hesitate to contact doctors and nurses at the clinic or hospital if you have concerns or questions.

Possibility
 

Stay positive

  • Physical activity is particularly important for people with haemophilia to help strengthen muscles and support joints. Just be aware that children who engage in sport activities more often may need to adjust their medication when it comes to increasing or decreasing dosing and frequency.
  • Remember that, with proper management, haemophilia should not control every aspect of your child's life. Their ability to participate in certain activities and opportunities will be limited only by their imagination.
     

 

 

Encourage your child

  • Help your child to play an active role in their treatment, so that the path to self-infusion becomes an easier and more natural transition. 
  • Encourage your child to live a 'normal life' and take part in sports with other children - just make sure they're non-contact to avoid injuries or bleeds. Being part of sporting clubs and having schedule with regular physical activity will not only do great things for your child's joints, but help them fit in and feel like the other kids.
  • Don't forget to enjoy all the wonderful things that having a child entails: play, have fun and explore the world together.

 

Giving your child injections can be difficult at first. 
However, with time and practice, you will both quickly get used to the process. 
To get a good start, here is a short guide on how to get the hang of injections.

Click here to read more about the many possibilities for a life beyond haemophilia.

 

 

 

NP-7858

I'm the parent of a child living with haemophilia

Do you see opportunities before limitations? 

Or is it the other way around? For all parents and carers of young children living with haemophilia, one of the hardest challenges is figuring out where to set the boundaries while still allowing for opportunities to explore, fall and learn. For a teenager wanting to feel like a ‘normal’ kid, the challenge becomes more about slowly learning to take responsibility for their haemophilia care plans. 

And because young people can’t make many of the big (and small) decisions by themselves, you as a mother or father play a vital role in shaping your child’s life. 

Child with haemophilia

A life like any other
in almost every way


Discovering that your child has a chronic illness can come as a shock. But just because an illness is life-long, it doesn’t mean that the future is going to be difficult. Today, haemophilia can be successfully managed with treatment and an integrated team that specialises in bleeding disorders. At first, you will have a lot of contact with this team, but in time, this is usually reduced to around only two follow-up consultations a year.

See opportunities before limitations

Responsive banner

The balance between protection and possibility

As a parent of a child with haemophilia, you need to take a number of things into consideration as your child grows up. Although you may be worried initially, haemophilia can indeed be managed and your child can look forward to a long and fulfilling life. It’s about finding the perfect – and very achievable – balance between protection and possibility.

Protection
 

Avoid injury and bleeds

  • Have a clear routine regarding your child’s haemophilia treatment right from day one.
  • Install safety gates, childproof locks and radiator covers, and attach corner guards to any sharp edges at home.
  • Maintain good oral hygiene to keep teeth and gums healthy, making it less likely for the gums to bleed or for your child to need dental surgery.
  • Avoid intramuscular injections as they can cause muscle bleeds.
  • Use paracetamol for pain relief. Other painkillers are harmful for people with bleeding disorders because they can interfere with blood clotting.
     

Utilise healthcare professionals

  • Inform your dentist, family doctor or other members of the healthcare profession that your child has haemophilia.
  • Give your child a ‘bleeding disorder alert card’ with their diagnosis, blood type, current medication and the telephone numbers of their care team.
  • Do not hesitate to contact doctors and nurses at the clinic or hospital if you have concerns or questions.

Possibility
 

Stay positive

  • Physical activity is particularly important for people with haemophilia to help strengthen muscles and support joints. Just be aware that children who engage in sport activities more often may need to adjust their medication when it comes to increasing or decreasing dosing and frequency.
  • Remember that, with proper management, haemophilia should not control every aspect of your child's life. Their ability to participate in certain activities and opportunities will be limited only by their imagination.
     

 

 

Encourage your child

  • Help your child to play an active role in their treatment, so that the path to self-infusion becomes an easier and more natural transition. 
  • Encourage your child to live a 'normal life' and take part in sports with other children - just make sure they're non-contact to avoid injuries or bleeds. Being part of sporting clubs and having schedule with regular physical activity will not only do great things for your child's joints, but help them fit in and feel like the other kids.
  • Don't forget to enjoy all the wonderful things that having a child entails: play, have fun and explore the world together.

 

Giving your child injections can be difficult at first. 
However, with time and practice, you will both quickly get used to the process. 
To get a good start, here is a short guide on how to get the hang of injections.

Click here to read more about the many possibilities for a life beyond haemophilia.

 

 

 

NP-7858