Pediatric hemophilia is a condition that occurs when a child is born without a protein in the blood that helps blood clot. As a result, children are prone to severe bleeding and other risks. There are effective treatment options.

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When most of us get a minor cut or injury, bleeding is temporary and stops after a few minutes. This is due to a type of protein in your blood called a clotting factor that stops the bleeding from continuing. Pediatric hemophilia is a bleeding disorder where a child’s blood lacks this clotting factor. This may result in excessive bleeding and other disabilities.

Hemophilia is rare and usually affects males, affecting about 1 out of every 5,000. Hemophilia is a treatable condition, and most children with it are able to lead full and healthy lives. However, the condition requires lifelong treatment.

Here’s a look at what hemophilia is, its symptoms, causes, treatments, and the outlook for children who have it.

Learn more about hemophilia.

Hemophilia is a bleeding disorder where children lack a clotting factor, also known as a coagulation factor, usually present in the blood. Children with hemophilia tend to bleed and bruise easily and may experience severe bleeding. Hemophilia may be noticed after circumcision when bleeding is more extensive than expected, or it may be noticed when a baby starts to crawl or walk and bruises easily.

There are two main types of hemophilia:

  • Hemophilia type A: Type A hemophilia is caused by a deficiency in coagulation factor VIII. It is the more common form and is more severe.
  • Hemophilia type B: Type B hemophilia is caused by a deficiency in coagulation factor IX. It is the less common form. It is less severe and generally needs less medication to treat.

Hemophilia can be further divided into categories based on how severe it is:

  • in severe hemophilia, you have less than 1% of blood clotting factor levels
  • in moderate hemophilia, you have between 1–4% of blood clotting factor levels
  • in mild hemophilia, you have between 5–40% of blood clotting factor levels

Language matters

In this article, we use the terms “male” and “female” to refer to someone’s sex as determined by their chromosomes, not their gender. A person’s gender identity may differ from the sex they were assigned at birth.

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Symptoms of hemophilia vary from one person to another, depending on how severe their condition is.

People with milder forms of hemophilia may experience:

  • easy bruising
  • increased nosebleeds
  • frequently bleeding gums
  • heavy menstrual periods, in people assigned female at birth
  • heavier than normal bleeding after surgeries or injuries

People with more severe forms of hemophilia may have symptoms like:

  • abnormal bleeding after birth (such as during circumcision or vaccinations)
  • easy bruising, which may be noticed soon after a baby starts becoming mobile
  • heavy bleeding of the skin after cuts or minor injuries
  • nose bleeds or gum bleeds that are difficult to control
  • bleeding of internal organs, such as the brain, intestines, muscles, joints

Hemophilia is almost always inherited and results from a lack of certain clotting factors in a child’s blood. Hemophilia A and hemophilia B are X-linked diseases, meaning that the affected genes are present in the X chromosome.

If the female parent is a carrier of hemophilia, this means one of their X chromosomes is affected. They may not show any signs or symptoms of the condition but can still pass it on to their children.

If the female parent is a carrier:

  • there’s a 50/50 chance they will pass the genes on to her children
  • males who inherit the genes will have hemophilia
  • females who inherit the genes will be carriers of the disease and can pass it to their children

If the male parent has hemophilia, but the female parent is not a carrier, no male children will have the disease, but female children have a 50% chance of being carriers of the disease.

Children have a chance of being born with hemophilia if the disease runs in their family, as it is usually inherited. However, some children get hemophilia without having any family members with it. Sometimes, new mutations in clotting genes occur, and a child is born with hemophilia.

Hemophilia A is more common than hemophilia B, with about 80–85% of cases being hemophilia A. Hemophilia occurs almost exclusively in males. People of all racial and ethnic groups can get hemophilia.

Treatment for hemophilia involves intravenous (IV) infusions of the clotting factor missing from the child’s blood. These infusions can be done at home after patients are given careful instruction. Infusions have to be done regularly to avoid severe bleeding and other common issues.

New treatments for hemophilia are in development, including IV infusions that last longer and don’t require as many applications, as well as gene therapy, which can alter a person’s genes so the body produces its own missing blood clotting factors.

Before modern treatments were available for hemophilia, most children wouldn’t live past the age of 11. However, today, children with access to treatments can live full, healthy, and long lives.

Although the condition may be severe and can lead to serious disease and disabilities without treatment, available treatments are highly effective and safe.

If there is a known family history of the condition, doctors will test babies for hemophilia at birth. But some babies without a known family history will only get a test when they show signs, such as unusual bleeding or bruising.

Diagnosing hemophilia involves tests to see if the blood is clotting normally. Doctors may also carry out tests to look for the presence or absence of blood clotting factors.

Is hemophilia always inherited?

In rare cases, hemophilia is not present at birth but develops later in life. This usually happens due to auto-antibodies that attack proteins in the blood that allow blood to clot (clotting factors).

What is the life expectancy of a child born with hemophilia?

Most otherwise healthy children with access to treatment can expect to live about as long as the general population.

Can children with hemophilia play sports?

Good muscle tone can protect children from frequent bleeding, so exercise is encouraged. Children with hemophilia should avoid high-contact sports.

Hemophilia is a serious condition that occurs when a child is born without a clotting factor that causes blood to clot. This puts a child at risk of uncontrolled or severe bleeding. However, the condition can be treated with infusions of the blood clotting factor that the child is missing.

If you have a family history of hemophilia or your child is showing signs of unusual bleeding or bruising, please contact your child’s healthcare professional.