ACCEPTING THE ‘NEW NORMAL’
Once you’ve processed the diagnosis, it’s time to move forward. By working with your Hemophilia Treatment Centre (HTC), you and other family members will learn how to provide medical treatment for your child. The best thing you can do at this time is to learn as much as you can about hemophilia. As you gain the knowledge and skills needed to help your baby, you will also gain confidence in managing their condition and its impact on the family. Remember that you and your family will not be alone: you have the support of your HTC team and the many other families in the hemophilia community.
PREPARING FOR DEVELOPMENTAL MILESTONES
The first thirteen months of any baby's life will be full of ups and downs. Just when you think you know exactly what you are doing as a parent or loving family member, they learn a new trick. Babies are constantly evolving: smiling, cooing, crawling, and walking—it's hard to keep up!
➥ By four months they may be starting to rock themselves
➥ By six months you might notice they aren't in the same place as you put them because they have started to creep or roll around the floor
➥ At eight months they may pull themselves up on furniture
➥ When they are around one year old they start walking
➥ After turning one year old they will be all over the place!
Just because you or your loved one’s baby has hemophilia, it doesn't mean they won't be as active as other children. At each stage of development, it is very important to monitor them closely and watch out for their safety. There are many helpful safety guides available at your HTC, and a nurse coordinator can provide you with some tips and advice. Try and enjoy these special years in your child’s life. While you need to take certain precautions and think of things other new parents may not have to think about – you can still enjoy watching your child grow, explore and entertain. Go Back
IMPORTANT FIRST STEPS IN CARING FOR A NEW BABY
There are a few key steps you and your family can take to ensure that your first year with your new baby is both fulfilling, and healthy:
➥ Ensure you have a good family doctor and access to a HTC. Your family doctor or pediatrician does not have to be an expert on hemophilia, but they will give you all the usual support needed by parents and their children. The HTC staff will work with your family doctor to provide your child with more specialized care.
TIP: Make sure all family members and other caregivers (like babysitters) have contact information for the baby’s parents, doctor, and HTC.
➥ Join the Canadian Hemophilia Society (CHS). This organization will provide any information the family needs, as well as help them contact other families living with hemophilia, who can be of great support.
➥ Make sure that you and other caregivers understand the baby's diagnosis—in particular, their factor VIII or factor IX levels because it affects the infant’s specific treatment regimen. Keep a treatment diary that’s accessible to all of your child’s caregivers.
➥ Make sure you give yourself breaks. Ask a family member or close friend to babysit so that you and your partner can have time on your own. It’s important that any caregiver (including babysitters) knows the signs of a bleed and informs you immediately. Carry your cell phone at all times, and make sure your caregiver has your number on hand. Go Back
➥ The child should be immunized against the full range of infectious diseases. These types of injections are generally safe because they are small. But make sure the healthcare professional administering the injection is aware of the child’s hemophilia so they can use the smallest needle possible and maintain pressure on the injection site slightly longer than usual. You can always check with your HTC first if you have any concerns about immunizations. And make sure all caregivers for the child are aware of his or her records and appointments.
➥ Involve other family members, including the child’s brothers and sisters, in the baby's care. It’s very important to provide attention to the baby—but not at the expense of siblings, which can cause resentment and teach the affected child to become overly dependent on you.
It's natural to have lots of questions about the care and treatment of your or your loved one’s baby. You’ll find a great deal of useful information on this website, but just remember that for medical advice, always contact your doctor, nurse coordinator, or other HTC staff member. Go Back
MANAGING THE UPS AND DOWNS
The toddler years are some of the most difficult for the parents and families of a child with hemophilia. At this age, children need to explore freely and learn to set their own limitations—so try not to be overprotective, as hard as it may be sometimes.
As toddlers start to explore, falls will happen, which means injuries will happen. This is a good age to start teaching your toddler that what you’re giving them (factor infusions) will make them “feel better.” Planting this seed early on lays the foundation for your child to understand and accept the treatment they will need throughout their life.
EXPLORING, PLAYING AND LEARNING TO WALK – SAFELY
In these early years, as a toddler starts ‘finding their legs’, it's nearly impossible to prevent minor injuries. Some parents pad sharp corners or sew padding into their child’s clothes. Some pediatricians suggest wearing a helmet, while others feel that some children become unbalanced wearing one and should learn to walk without one. Talk to your child’s pediatrician to help decide what works best for you. Go Back
TREATMENT OPTIONS
If a toddler in your family has severe hemophilia, they will probably develop their first bleed at this age. It is important that you—as well as other family members and caregivers—know what to do in the event of an injury. Prophylaxis—regular factor infusions to try to prevent bleeds from occurring—can help some families add some “normalcy” to their lives.
Make sure that anyone involved in the toddler’s care is aware of:
➥ What to do if an accident or injury occurs
➥ How to know if the child is having a bleeding episode—and who to contact about it
➥ When prophylaxis (preventative) treatment may be needed (e.g., when physical activities are planned)
Learn more on how daycares can help create a safe environment for your child
The toddler years are often when the possibility of home infusion is introduced to the family. There may be obstacles that need to be overcome, such as difficulty accessing veins for injection or fear of needles. Talk to your HTC team if you want more information about home infusion, and to learn how you can handle some of these challenges. Go Back
As hard as it may feel sometimes, try and focus on the fun of life with a toddler. Enjoy every moment of watching them, grow, explore, and form a personality. There will be good days, and bad. With time, you’ll gain confidence and living with hemophilia will just become your ‘new normal’.
GROWTH, DEVELOPMENT, AND SOCIALIZATION
During this period of growth and development, children begin to learn and master many developmental tasks:
➥ Both fine and gross motor skills, such as walking, jumping, balancing, riding a tricycle, climbing stairs, feeding themselves, and drawing pictures
➥ Greater involvement in the family unit
➥ Communicating with an increasingly larger group of people
➥ Becoming independent (e.g., dressing themselves)
➥ Toilet training (although each child will accomplish this at a different age)
➥ Learning to control impulses and being guided to different activities
Many parents and families ask if hemophilia will affect their child's normal growth and development with these and many other tasks. The answer is a resounding NO! Hemophilia will NOT affect or hinder a child's development. But, your family will face unique, and evolving, challenges that require open and ongoing communication with schools, daycares, and your HTC team. Learn more on how daycares and schools can help create a safe environment for your child. Go Back
CONSIDERATIONS FOR DAYCARE
Before you and your family visit or enroll in a daycare centre, discuss your safety concerns with your doctor or nurse coordinator. These conversations will help you understand the most important points that you can then discuss with daycare centre staff, such as:
➥ The staff's willingness to learn the basics of hemophilia
➥ The staff's willingness to work with you and the HTC to develop a plan of action for emergencies
➥ The professionalism and maturity of the staff working in the daycare centre
➥ The ratio of staff to children
➥ The physical safety of the environment (e.g., steep stairs, sharp protruding edges)
If you need help deciding on a daycare, ask your HTC nurse coordinator to contact a few that you’ve selected to help address any concerns, so that you can make an informed decision.
THE FREEDOM TO GROW—SAFELY
The preschool years are busy ones, filled with play dates, birthday parties and much more. Expect there to be bumps, falls, and tumbles— and depending on the severity of the hemophilia, bleeds. Know that there are proven treatments available that can treat bleeds, including factor infusions. In most cases, bleeds will resolve with treatment. Go Back
It's natural to have lots of questions about the care and treatment of your or your loved one’s preschooler. You’ll find a great deal of useful information on this website, but just remember that for medical advice, always contact your doctor, nurse coordinator, or other Hemophilia Treatment Centre staff member.
More on treating & managing bleeds
Factor replacement therapy treats bleeding by providing an infusion of the blood clotting factor that people with hemophilia lack. There are also other treatment options. Learn more about treatment options
DISCOVERING THEIR WORLD
Children just entering school are learning and mastering the key developmental tasks, including:
➥ Basic physical and intellectual skills
➥ Socially relating with peers and adults
➥ Appropriate communication skills
➥ Becoming a valued member of the family unit and of a group (e.g., of the class at school)
You may feel afraid or anxious about cutting ties and letting go, even a little. It’s normal to feel this way – it can be hard to not be with your child for a good part of the day. It’s also a tough time for your child, who may start to react as they adapt to a new and demanding routine, and not being ‘like every other kid’. Tantrums, arguments, impatience – this is typical with any young child, and is even more true with a child learning to deal with their hemophilia.
As you navigate new issues with your young child and school don’t hesitate to reach out to your HTC team if you have any concerns. They have a wealth of experience in this area and are there to help parents and families through this new stage. It’s also important to work closely with schools and anyone else who may care for your child away from home, to ensure they know how they can create a safe space, and what to do in the event of a bleed. Go Back
HELPING CHILDREN LEARN TO ACCEPT TREATMENT
At this age, younger children can start learning how to "hide" a bleed in order to avoid treatment. This may be because they’re afraid of needles or worry that an infusion will mean having to miss a favourite activity.
While the child’s fears and concerns are valid, it’s important not to teach them the importance of treatment. Infusions will likely be an ongoing event in the child's life, so they must learn to recognize why they’re important and that they’ll be a part of their life. Try to focus on the positives of the infusion: that it is meant to help the bleed get better and help get them back to doing fun stuff. Talk about the hospital and infusion centre as “safe places,” so that your child doesn’t associate them with feelings of fear. And if you’re not already performing infusions at home, talk to your nurse coordinator about getting the proper training. Home infusions can be less stressful and disruptive to both your child and your family.
TIP: Make your child the “captain” of their hemophilia care team. This can make them feel proud and important, and helps set the stage for them taking on more responsibility as they grow.
AFTER-SCHOOL ACTIVITIES
These early school years are when kids start wanting to join extracurricular activities such as Beavers, swimming classes, music lessons, and sports teams. These activities are very important for a child's social and emotional development. Generally, as long as you check out what’s involved in the activity or club—and share correct, comprehensive information about your child's condition and any limitations with program leaders—your child should be allowed to join. While you don’t want to limit your child, precautions still need to be top of mind – for both you and the person responsible for your child during an activity. Go Back
Once again, your HTC can help you with guidelines about which activities are safe and which are risky, and can even talk to program supervisors for you. And for medical advice, always contact your doctor, nurse coordinator, or other HTC staff member.
FITTING TREATMENT INTO BUSY LIVES
With school, activities, play dates and other family members’ needs, establishing a treatment routine that works for your family is crucial. It’s important to focus on helping your child live as normal a life as possible – and having a routine can help.
Prophylaxis—factor treatment given on a regular basis to try to prevent bleeding—usually requires a few infusions per week. And extra infusions may be necessary in advance of certain activities, so coordination with activity leaders is needed so that this can be planned. If your child is receiving prophylaxis, work with your HTC team to develop a treatment plan that meets medical needs while causing minimal disruption to your child’s (and the family’s) day-to-day routines.
The good news is that by this age, treatment should be getting a bit easier. A child’s veins are more developed and visible, which can help make injections easier. And at this point, most parents have mastered home infusions, which minimizes the need for trips to the hospital or treatment centre.
" Parents and all other caregivers should monitor your child’s condition thorough bleed records and treatment diaries. Ask your HTC nurse if you need one. This will help your doctor see how your child is doing, and modify treatment if necessary "
WORKING WITH YOUR CHILD’S SCHOOL
You’re not always there to watch over your child – especially as they grow and spend more time outside the home. So, it’s critical that you educate schools and any other caregivers on your child’s condition and how to respond to a bleed. They should also have the contact numbers for you and your HTC care team in the event of an emergency. Go Back
Here are some good things to inform school personnel and caregivers about:
➥ If the child complains of pain, believe them, even if there is nothing to see.
➥ Difficulty moving a limb normally, or excessive pain with or without moving, is a symptom of bleeding.
➥ Be aware that a child might try to hide their symptoms to avoid missing an exciting activity.
➥ Parents should be the first people consulted if you suspect a bleed. Make sure you always have all the parents' contact information on file (home, work, and cell phone numbers, pager number, etc.).
➥ The delay between the beginning of a bleed and the treatment must be reduced as much as possible—prompt treatment is crucial.
➥ Significant trauma to the head, among other injuries, can cause a life-threatening bleed.
➥ You must not "wait and see"—notify parents and emergency medical staff immediately.
➥ Basic first aid care can be administered when a bleeding episode happens—remember the key words Rest, Ice, Compression, and Elevation (RICE).
➥ Treat the child with hemophilia like every other child; avoid treating them in a way that could make them feel different or isolated from the other children.
TESTING LIMITS AND ACCEPTING MORE RESPONSIBILITY
You probably remember being a teenager – and testing the boundaries with your parents. Your child may do the same as they enter their teen years. Some may take more risks than others. There’s only so much you can do as a parent – if your kids test the limits, and push back, it’s something you’ll have to deal with together. What’s key is that taking responsibility for their health remains at the forefront of your child’s mind. Go Back
Teenagers with hemophilia usually start to make more of their own decisions regarding the activities they choose and their treatment. Peer pressure can be especially difficult for a teenager who feels ‘different’ because they have hemophilia. This may lead to more risk-prone decisions, such as participating in higher-risk sports, like football or rugby. As a parent, it’s important to have a frank discussion with your teen about the potential risks of the activity, and the protective measures (such as special equipment) needed. Together, you can make a decision that helps your teen grow and bond with their friends and minimize risks.
SUPPORTING TEENS TOWARD INDEPENDENCE
As teens start to take more responsibility in managing their own care, one of the biggest areas of growth may be learning to self-infuse. This involves the technique itself, plus organizing appointments and follow-up and sticking to the treatment schedule.
As a parent, allowing your teenagers to start making their own decisions, and depend less on you, can be a difficult transition. It can be hard letting go. Again, having an open dialogue with your teen about what it means to manage your own care, and the consequences of not staying vigilant, is important. Also remind them that you’ll always be there for support, whenever they need it. As your teen starts taking on more responsibility, he’ll become more confident – which, in turn, will give you confidence that he’ll be ok.