Parenting & Family
The more you know about how haemophilia effects each stages of your child's development, the better you can help them grow toward independence.
Parents face specific issues and challenges when raising a child with haemophilia its an emotional time. Here are some helpful links to help with this process:
Newborns: adjusting to haemophilia
Haemophilia & Toddlers
Haemophilia & Primary - Teenagers
Living with Haemophilia will mean that you will need to make a few changes to your lifestyle. However, it shouldnt alter everything you and your family do.
Newborns: Adjusting to Haemophilia
Finding out that your newborn has haemophilia can be overwhelming. Parents feel a wide range of emotions from sadness and worry, to fear and denial.
Sadness or worry over limitations
Over time you will find that your child really has very few limitations, maybe even fewer than those experienced by other children.
Fear and anxiety
You might be scared that you wont be able to protect your child from getting hurt, or be able to provide the treatment your child needs.
The truth is, no parent is able to stop their child from getting hurt and the time will come when you're able to treat them effectively.
Guilt and denial
Because haemophilia is a genetic disease, you might feel guilty that you "caused" the illness. Its important to remember that neither you or your partner are responsible for the childs condition.
Some parents initially refuse to believe or admit that their son has haemophilia. This reaction, while understandable, can be dangerous if it prevents you from providing the treatment your child needs.
Being Overprotective
Parents always experience fear of the first bleed waiting for it, being nervous about it, and then dealing with it.
You ll need to strike a balance between being overprotective and being too relaxed. This is an issue you ll be dealing with again and again.
Dont try to deal with your child's haemophilia alone.
Develop relationships with people and organisations that will help you and your child. You can begin by finding your local Haemophilia Treatment Centre.
Haemophilia & Toddlers
As your child becomes mobile and begins to explore the world, both of you will face a new set of practical and sometimes emotional challenges.
Once babies begin crawling and getting around, there are a range of practical ways to help prevent injuries, including:
Since bleeds will become a normal part of your child's life, a matter-of-fact attitude is crucial.
As toddlers develop their own personalities they often begin to oppose their parents. A child with haemophilia may say "no" or have a temper tantrum when its time for his infusion.
Haemophilia & Primary School - Teenagers
As your child matures, he or she might start to resist the restrictions caused by their treatment. Talk honestly about your child's treatment, and choices.
During the primary school and teenage years, the influence of friends and peers becomes increasingly important to your child. It's natural that they might not want anyone to know about their haemophilia for fear of seeming "different."
Being realistic about the consequences of not following treatment, as well as giving them greater choices about how to manage their condition, will help them 'stick with it'.
As your child gets older you can start preparing them for independent living by expanding their limits and choices while still ensuring that they acts in safe ways.
The more you know about how haemophilia effects each stages of your child's development, the better you can help them grow toward independence.
Parents face specific issues and challenges when raising a child with haemophilia its an emotional time. Here are some helpful links to help with this process:
Newborns: adjusting to haemophilia
Haemophilia & Toddlers
Haemophilia & Primary - Teenagers
Living with Haemophilia will mean that you will need to make a few changes to your lifestyle. However, it shouldnt alter everything you and your family do.
Newborns: Adjusting to Haemophilia
Finding out that your newborn has haemophilia can be overwhelming. Parents feel a wide range of emotions from sadness and worry, to fear and denial.
Sadness or worry over limitations
Over time you will find that your child really has very few limitations, maybe even fewer than those experienced by other children.
Fear and anxiety
You might be scared that you wont be able to protect your child from getting hurt, or be able to provide the treatment your child needs.
The truth is, no parent is able to stop their child from getting hurt and the time will come when you're able to treat them effectively.
Guilt and denial
Because haemophilia is a genetic disease, you might feel guilty that you "caused" the illness. Its important to remember that neither you or your partner are responsible for the childs condition.
Some parents initially refuse to believe or admit that their son has haemophilia. This reaction, while understandable, can be dangerous if it prevents you from providing the treatment your child needs.
Being Overprotective
Parents always experience fear of the first bleed waiting for it, being nervous about it, and then dealing with it.
You ll need to strike a balance between being overprotective and being too relaxed. This is an issue you ll be dealing with again and again.
Dont try to deal with your child's haemophilia alone.
Develop relationships with people and organisations that will help you and your child. You can begin by finding your local Haemophilia Treatment Centre.
Haemophilia & Toddlers
As your child becomes mobile and begins to explore the world, both of you will face a new set of practical and sometimes emotional challenges.
Once babies begin crawling and getting around, there are a range of practical ways to help prevent injuries, including:
- putting bumper pads along the edge of the cot.
- cushioning any furniture with sharp edges.
- putting access gates across stairs to prevent falls.
- using knee and elbow pads for protection against joint bleeds.
- carpeting or buying rugs to soften hard surface floors.
- using a helmet when playing to protect against head injuries.
Since bleeds will become a normal part of your child's life, a matter-of-fact attitude is crucial.
- Show your child that although the bleed needs dealing with appropriately, its not the end of the world!
- Avoid blaming the child for causing a bleed, at worst your child may try to keep injuries from you.
- Reinforce that when he falls or gets hurt, there is something he can do to feel better.
As toddlers develop their own personalities they often begin to oppose their parents. A child with haemophilia may say "no" or have a temper tantrum when its time for his infusion.
- Remember that infusions are not the most pleasant things and your child wont understand of why it's necessary.
- Rewarding your child when he's co-operative during his infusion will increase a his willingness to go along with his treatment plan.
- Prepare for hospital trips ahead of time encourage your child to select some special toys and put them in a bag reserved only for these trips.
Haemophilia & Primary School - Teenagers
As your child matures, he or she might start to resist the restrictions caused by their treatment. Talk honestly about your child's treatment, and choices.
During the primary school and teenage years, the influence of friends and peers becomes increasingly important to your child. It's natural that they might not want anyone to know about their haemophilia for fear of seeming "different."
Being realistic about the consequences of not following treatment, as well as giving them greater choices about how to manage their condition, will help them 'stick with it'.
As your child gets older you can start preparing them for independent living by expanding their limits and choices while still ensuring that they acts in safe ways.
