ER Preparedness for Bleeding Disorder Emergencies

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At this step in your child’s development, bleeds could be more frequent with childhood activities. It is very important to recognize when a bleed occurs and whether you need to seek emergency care. Below are the types of bleeds that would need emergency care and what to bring to the E.R. with you and your child.

This section of Emergency Room Visits covers:

Bleeding Sites That Require Special Attention

Be Prepared for an Emergency Room (ER) Visit

Bleeding Sites That Require Special Attention 

Head

In all age groups, bleeding into the head (called intracranial hemorrhage) is the most common cause of deaths from bleeding. It may occur spontaneously or after a minor or major trauma. Headache, neck ache, sleepiness, extreme sensitivity to light, nausea, vomiting, or loss of consciousness could indicate bleeding into the head. However, there may be no symptoms at all.

Steps to take:

Contact your child’s HTC immediately if there is a head injury or headache. Call 911 immediately if there is a change in consciousness or vision, a seizure, or sudden projectile vomiting.

Throat or Tongue

Bleeding in the throat or tongue can cause them to swell, blocking the airway and interfering with breathing. Treatment should begin immediately. This type of swelling usually occurs after an injury, but it may also be caused by some medical or dental procedures.

Steps to take:

Call 911 immediately if breathing is difficult.
Contact your child’s HTC immediately if you detect bleeding in the throat or tongue.

Spinal Cord

Spinal cord bleeding is rare but serious because it can cause permanent paralysis. Signs include weakness, tingling or pain in the arms or legs, and difficulty urinating or having a bowel movement.

Steps to take:

Call 911 immediately if you suspect spinal cord bleeding.
Contact your child’s HTC immediately if a leg or arm becomes weak, numb, or tingles.

Gastrointestinal

Bleeding from the stomach or intestine can lead to serious complications if it is not treated. Blood in vomit, vomit that looks like coffee grounds, or black or tar-colored stools are signs that bleeding may be occurring.

Steps to take:

Contact your child’s HTC immediately if these symptoms are present.
Call 911 immediately if there are large amounts of blood in the vomit or stool, the abdomen is distended or painful, the person feels weak or dizzy.

Eye

Signs of an eye bleed include pain and swelling in and around the eye; a change in vision, including double or blurred vision; and the white of the eye (called the conjunctiva) becomes reddish. Because some signs of an eye bleed may involve a change in vision, it may be impossible for a baby to tell you something is wrong.

Steps to take:

Call your child’s Hemophilia Treatment Center (HTC) immediately if you suspect an eye bleed.

Deep Cuts or Lacerations

Deep cuts or lacerations are fairly easy to see. They can occur near the surface of the skin or have deep, smooth, or jagged edges.

Steps to take:

Call your child’s Hemophilia Treatment Center (HTC) immediately if a deep cut or laceration occurs.

Remember: When in doubt, treat--even before waiting for test results

Be Prepared for an Emergency Room (ER) Visit

The Hemophilia Treatment Center (HTC) may instruct you to go to the E.R. with your child. They can offer guidance for the proper steps to take, advise you where to go, and often will pave the way to make the E.R. visit go more smoothly by alerting the E.R. in advance of your arrival.

If you are unable to contact the HTC or your phone call is not returned quickly enough, go straight to the E.R.

Proper planning for an emergency begins well in advance. It is recommended that a person with a bleeding disorder get a Hemophilia Emergency Care Letter from their health care provider or HTC. This letter should include:

An explanation of the bleeding disorder
The health care provider’s description of the type and severity of the bleeding disorder
Possible inhibitor status
Basic treatment guidelines
Dosage chart for bleeding disorder’s medication for specific injuries or types of bleeds
Current treatment plan
Bleeding disorder’s prescription

The letter should also include important phone numbers for the HTC. Be sure to carry proof of your insurance coverage and a contact number for your health plan.

A good idea is to know the route to the hospital before an emergency occurs. Driving at your leisure gives you the opportunity to learn the route if you have not been to the E.R. before, or to discover new landmarks and traffic patterns that have changed since your child’s last visit.

Here are some items to bring with you to the E.R.:

Hemophilia Emergency Care Letter from your health care provider
Infusion supplies (if needed)
Your child’s bleeding disorder’s medication
Insurance card
Ice pack
HTC contact information
Toys (books, crayons, stuffed animal, games)
Snacks and drinks
Change of clothes

What to Expect in the Emergency Room (E.R.)

When it comes to emergencies, you may have to educate the E.R. doctors, nurses, and other members of the health care team. You should bring medical literature that explains your child’s bleeding disorder and the emergency treatment of it to show health care professionals in the E.R.

The National Bleeding Disorders Foundation's Medical and Scientific Advisory Council (MASAC) has issued the important document, Guidelines for Emergency Department Management of Individuals with Hemophilia (Number 275), which provides a concise but comprehensive overview of hemophilia for health professionals. The guidelines instruct medical personnel on how to assess patients with hemophilia, what diagnostic tests should be performed, and how to treat emergencies.

Another MASAC document related to emergency care is MASAC Recommendations on Improved Access to Emergency Medical Care for Persons with Inherited Bleeding Disorders (Number 113).

If you would like more information about all current recommendations, please visit MASAC Guidelines

Many parents of children with hemophilia have learned to expect the unexpected. If you must visit the E.R., you should anticipate having to stay for hospitalization. This includes changing clothes and other items you may need for at least a day or two and arranging for the care of other children in the family.

MASAC For You – Guidelines for Emergency Department Management of Hemophilia and Other Bleeding Disorders, provides a summary to help you navigate your child’s E.R. visit.

As a young person, your body is growing and changing a lot. Sometimes, when you do things like playing sports or running around, you might have a bleed. This means that blood comes out of your body from a place where it shouldn't. If you have a bleed, it is important to know what to do. Some bleeds are more serious than others, and you might need to go to the hospital right away. When you go to the E.R., make sure to bring an adult with you. You should also bring any medication you are taking and tell the doctors if you have any medical conditions they should know about.

This section of Emergency Room Visits covers:

Bleeding Sites That Require Special Attention

Be Prepared for an Emergency Room (ER) Visit

Bleeding Sites That Require Special Attention 

It's important to know what to do if you or someone you know has bleeding in different parts of the body. Bleeding in some areas can be very serious, and you might need to get help right away.

Head

If you have a headache or neck pain, feel sleepy or sensitive to light, or feel like throwing up, you might have bleeding in your head. Call your health care provider or 911 right away if you have any of these symptoms.

Throat or tongue

Bleeding in your throat or tongue can make it hard to breathe. Call 911 if you are having trouble breathing. Call your health care provider if you see bleeding in your throat or tongue.

Spinal cord

Bleeding in your spinal cord can cause your arms or legs to feel weak or numb. You might also have trouble going to the bathroom. Call 911 if you think you have spinal cord bleeding. Call your health care provider if you have any weakness, numbness, or tingling in your arms or legs.

Gastrointestinal

Bleeding from your stomach or intestines can cause vomit that looks like coffee grounds, blood in your vomit, or black or tar-colored stools. Call your health care provider right away if you have any of these symptoms.

Eye

If you have pain, swelling, or redness in or around your eye, or if your vision is blurry or double, you might have an eye bleed. Call your health care provider right away.

Deep cuts or wounds

If you have a deep cut or wound, you can see that it is bleeding a lot. Try to stop the bleeding by applying pressure with a clean cloth or bandage. If the bleeding does not stop, call your health care provider, or go to the hospital right away.

Remember, if you are not sure what to do or if you are worried, always ask an adult for help.

Remember: When in doubt, treat--even before waiting for test results

Be Prepared for an Emergency Room (ER) Visit

The HTC can give you some advice on what to do, where to go, and they might even call the E.R. to let them know you are coming. This way, when you get there, everything will go more smoothly and the people at the E.R. will already know what to do to help you. 

If you are unable to contact the HTC or your phone call is not returned quickly enough, go straight to the E.R.

When you have a bleeding disorder, it is important to plan for emergencies. That means getting a special letter from your doctor or the Hemophilia Treatment Center (HTC) that explains your condition. This letter will have important information, like what kind of bleeding disorder you have, how bad it is, and what kind of treatment you need. It will also include a chart that shows how much medicine you should take for different kinds of bleeds or injuries.

The letter will also have phone numbers for the HTC in case of an emergency, so you can get help right away. And it is a good idea to keep proof of your insurance and a phone number for your health plan with you too. Remember, planning ahead can help you stay safe and get the right treatment when you need it!

When you know how to drive, a good idea is to know the route to the hospital before an emergency occurs. Driving at your leisure gives you the opportunity to learn the route if you have not been to the E.R. before, or to discover new landmarks and traffic patterns that have changed since your last visit.

Here are some items to bring with you to the E.R.:

Hemophilia Emergency Care Letter from your health care provider
Infusion supplies (if needed)
Your child’s bleeding disorder’s medication
Insurance card
Ice pack
HTC contact information
Toys (books, crayons, stuffed animal, games)
Snacks and drinks
Change of clothes

What to Expect in the Emergency Room (E.R.)

When it comes to emergencies, you may have to educate the E.R. doctors, nurses, and other members of the health care team. You should bring medical information or booklets that explain your bleeding disorder and the emergency treatment of it to show health care professionals in the E.R.

Another MASAC document related to emergency care is MASAC Recommendations on Improved Access to Emergency Medical Care for Persons with Inherited Bleeding Disorders (Number 113).

If you would like more information about all current recommendations, please visit MASAC Guidelines

Keep in mind that if you do need to go to the hospital, you may have to stay for more than the day. That means you should pack a bag with a change of clothes and anything else you might need while you are there, like your toothbrush and favorite book or game. You should also let your family know what's going on and arrange your schedule, like telling your school you won't be there for a few days. It is important to be ready for anything and to stay positive. The health care providers in the hospital are there to help you and make you feel better. So, try not to worry, you're in good hands!

MASAC For You – Guidelines for Emergency Department Management of Hemophilia and Other Bleeding Disorders, provides a summary to help you navigate your child’s E.R. visit.