How to Create a Hemophilia Emergency Preparedness Plan for Your Child

What parents of kids with bleeding disorders can do to plan for medical emergencies
Author: Donna Behen

If your child has a bleeding disorder, you don’t want to wait until an accident or emergency to figure out what to do to get care for them. Here are the essential elements of an emergency preparedness plan to put together now, before your child needs it.

Establish a relationship with an HTC

Hemophilia treatment centers (HTCs) provide comprehensive care, which is a coordinated, multidisciplinary approach to managing hemophilia, von Willebrand disease, and other bleeding disorders. The HTC team consists of physicians (hematologists), nurses, social workers, physical therapists and other healthcare providers who specialize in the care of people with bleeding disorders. HTC staff can advise you on proper protocols for treatment in general and in the event of an emergency.

Have Your Child Wear a Medical ID

Make sure your child wears a medical ID at all times. The ID should include diagnosis, medication doses, and phone numbers for doctors and treatment centers.

Carry an Emergency Care Letter

Your HTC can provide you with a letter that you can give to emergency room providers or any other healthcare professionals. The letter should include important phone numbers for the HTC as well as:

  • An explanation of the bleeding disorder
  • The physician’s description of the type and severity of the bleeding disorder
  • Possible inhibitor status
  • Basic treatment guidelines
  • Dosage chart for clotting factor replacement for specific injuries or types of bleeds
  • Current treatment plan
  • Factor prescription

Have a Go-Bag Ready

In addition to your emergency care letter, you’ll also want to keep a go-bag packed and ready in case your child needs to go to the ER or hospital. The bag should contain:

  • Your child’s medication (factor, infusion supplies, etc.)
  • Your health insurance card
  • An ice pack for your time in the waiting room
  • Extra clothes

Keep Your HTC in the Loop

If you’re heading to the ER, call your HTC to let them know. They can offer guidance for the proper steps to take, advise you where to go, and often will pave the way to make the ER visit go more smoothly by alerting the ER in advance of your arrival.

If you need to call 911 because of a serious medical emergency such as a head bleed, you should call your HTC immediately after talking with the 911 operator. The HTC can also help with the emergency care of a bleed until Emergency Medical Services (EMS) arrives. If EMS determines a trip to the ER is needed, the HTC can contact the hospital and provide important medical information.