Growing up with a bleeding disorder, together
From spotting bleeds in little ones to helping kids stay active and prepared, caregivers are at the heart of living well with hemophilia. Here you’ll find practical tools, guidance, and connection to help you feel supported every step of the way.
Abdul lives with hemophilia A.
Zihao lives with hemophilia A.
Hemophilia is lifelong
Children don’t outgrow hemophilia. When a child is diagnosed with hemophilia, their caregivers take the lead in keeping them safe and healthy. Learn how to spot bleeds and share this important information with others who help care for your child.
Bleeds don’t always look the same
Some cause clear symptoms. Others show up as subtle changes in behavior or movement. When in doubt, check with your child’s care team.
Recognizing joint bleeds in infants and young children
Check your child daily during diaper changes, bath time, and dressing. Compare joints (like knees, elbows, or ankles) to spot swelling, warmth, or changes that could signal a bleed.
Be sure to share this information with anyone who helps care for your child.
Watch for:
- Bruising (with or without lumps)
- Swelling
- One arm or leg looking larger or moving differently than the other
Feel for:
- Warmth
- Swelling
- Tenderness around joints or muscles
Be alert to:
- Crying or discomfort when picked up
- Unusual fussiness or restlessness
- Trouble rolling, crawling, standing, or reaching
Spot the signs:
bleeding symptoms to watch for
Carl lives with hemophilia A.
- Throwing up
- Difficulty crawling or walking straight
- Bleeding from the ears or nose
- Difficulty breathing
- Irritability, sleepiness, unable to wake
- Seizure
- Weakness or pain in arms or legs
- Trouble with urination or bowel movements
- Red or black stool
- Throwing up blood or black, syruplike material (may look like coffee grounds)
- Child protecting the joint
- Loss of movement
- Unwillingness to use the affected arm or leg
- Unable to reach or kick
- Warmth and swelling of joint area
- Crying or discomfort when joint is moved
- Limping
- Inability to put a heel on the floor when walking or standing
- Reduced movement or use of arms or legs
- Swelling, possible warmth and tightness when the area is touched
- Crying when area is moved or touched
- Limping
- Unwillingness to use the affected arm or leg
- Inability to put a heel on the floor when walking or standing
- Skin may look tight and shiny as it expands
Important safety note:
Bleeds in the head, neck, spine, or stomach are particularly serious. Contact your child’s doctor immediately especially if your child shows symptoms in these areas.
Planning ahead for the unexpected
When you care for a child with a bleeding disorder, preparing for the unexpected can help you feel more prepared in an emergency. A little planning now can make a big difference later.
Actor portrayal
Tip
If you need to head to the ER, call your HTC or your child’s doctor on the way. They may be able to alert the hospital and help reduce delays once you arrive.
Register with your local hemophilia treatment center (HTC).
Your HTC can coordinate with ER staff during an emergency.
Ask which local ERs are best equipped.
Some hospitals have on-call hematologists or “fast tracks” for patients with serious conditions.
Request an emergency letter from your doctor.
Request a letter from your doctor or your child’s doctor that includes their type and severity of hemophilia, inhibitor status, medications, and treatment plan. Carry copies with you and keep one in your go-bag.
Pack a go-bag for your child.
- All necessary medications and supplies (such as an infusion kit)
- Ice packs and safe pain relievers recommended by your doctor
- Emergency letter and medical history
- Comfort items—snacks, a favorite toy, book, or game—to help your child feel at ease
When to head to the ER
Not sure if it’s an emergency?
Your doctor or HTC can help you decide.
According to The National Bleeding Disorders Foundation, some common reasons to head to the ER include if your child:
Has a head or stomach injury
Sees blood in stool or is vomiting blood
Experiences numbness
in an arm or leg
Has a deep cut or laceration
Or if you’re unable to reach your HTC and your child needs treatment.
To learn more, go to the National Bleeding Disorders Foundation.
Helping others who care for your child with a bleed disorder
Sending your child with a bleeding disorder to school, day care, or a babysitter can bring up a lot of concerns—but with a little planning and clear communication, you can help everyone feel more prepared.
Actor portrayal
Here’s how to support your child and their caregivers as they step into this new chapter.
Teachers, nurses, babysitters, and other caregivers should know that:
- Hemophilia means slower clotting, not faster bleeding
- Your child can still play and participate—with a few extra precautions
- Even small injuries may need special attention
- Bleeding isn’t always visible—watch for pain, swelling, or changes in behavior
Caregivers should suspect a bleed if your child:
- Has pain, swelling, or warmth in a joint or muscle
- Walks with a limp or suddenly favors a different hand
- Seems unusually tired or hard to wake
- Cries without a clear reason
- Uses two hands for tasks they normally do with one
- Complains of numbness or tingling
- Stay calm and call a parent or emergency contact right away
- Help keep the child calm
- Offer a comfort item (toy, blanket, etc.) until help arrives
Teaching your child about hemophilia
Keep conversations age-appropriate and reassuring.
For younger kids:
Explain that their body takes longer to stop bleeding
Show them how to ask for help
Use simple language for pain or injury
For older kids:
Teach them when and how to speak up
Encourage self-advocacy at school
Involve them in their care plan
You don’t have to navigate hemophilia care alone—connect with resources and people who can help.
Victor lives with hemophilia A.
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