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.
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)
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.
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’.
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
See FAQs about hemophilia and toddlers