Having a disease that almost only happens to boys, the 4-year-old boy had 3 cerebral hemorrhages

Having just been born, baby BN (born in 2018 in Hai Phong) had swelling on one side of the top of her head. At 15 days old, the swelling did not decrease, the baby was taken to the hospital, diagnosed with hemophilia (hemophilia).

Bewilderment and panic are the feelings of Ms. – mother – never forget when the doctor informed about your child’s condition. Since then, baby N. often has pain in her arms and legs. When he was 16 months old and then 2 years old, he had two cerebral hemorrhages.

Every 2 months, she and her husband take turns taking their children to the hospital for blood transfusion.

Recently, baby N. was diagnosed with brain hemorrhage for the third time. She was admitted to the National Children’s Hospital with a fever of 38.5 degrees Celsius, abdominal pain, and vomiting.

After clinical tests and CT scan of the brain, the baby was diagnosed with cerebral hemorrhage on the background of a patient with hemophilia. Fortunately, it was detected and treated in time, the baby had no sequelae.

Ms. Th. added that her brother and grandson also have hemophilia.

The disease occurs almost exclusively in boys

TS.BS Nguyen Mai Huong – Head of Clinical Hematology Department of the National Children’s Hospital – on May 10, said hemophilia is an inherited blood clotting disorder caused by decreased or abnormal function of clotting factor VIII/ IX in a chain of 12 clotting factors.

The disease is almost exclusively seen in men, and women are rarely affected because the probability that both parents carry the disease gene is very low.

The symptom of hemophilia is bleeding, which usually appears when a child begins to learn to stand and walk. After falls or bumps while learning to walk, babies often have bleeding under the skin or bleeding from the lips and tongue.

In children 2-3 years old, bleeding in the joints is common with symptoms such as swelling, pain, reduced mobility of the limbs, or leaving sequelae of muscle and joint atrophy because of repeated relapses, fibrosis.

The most common bleeding joints are ankle, knee, and elbow joints. The muscles that bleed most often are the calf, thigh, and arm muscles; in which lumbosacral forearm bleeding is common.

According to Dr. Huong, if not treated promptly, children can experience complications such as muscle atrophy, stiffness, joint deformity leading to permanent disability. When bleeding in dangerous places such as the brain, neck, mouth, etc., if the bleeding is not stopped in time, the patient may die.

It is estimated that in Vietnam, there are about 6,400 people with hemophilia, but only about 4,000 patients are monitored and treated.

At the National Children’s Hospital, about 100 patients under 18 years of age are being monitored and treated, and about 20 new patients are diagnosed every year.

Doctors confirmed that hemophilia cannot be cured, but patients can completely live with it. Ideally, the person with this condition is treated early, periodically in primary care or at home.

Currently, there are less than 20 hemophilia treatment facilities nationwide, not enough to meet the treatment needs of patients in many localities. According to the National Institute of Hematology and Blood Transfusion, on average, a person with severe hemophilia can bleed more than 40 times per year. A survey at this institute showed that a child may have to miss school up to 50 days in a year to go to the hospital.

What to do when someone in your family has hemophilia?

Dr. Huong recommends that if someone in the family has hemophilia, parents should go to the doctor for counseling and screening for genetic diseases before marriage and before giving birth.

“Just doing a gene test to diagnose disease genes can be selected for the next generation to be born healthy,” the female doctor confirmed.

She said that for people with disorders of hemostasis and blood clotting, when injured, they need to go to the hospital immediately. Children with hemophilia need to avoid strenuous activities that cause injury.

In case of bleeding that is difficult to stop, or frequent bruising, joint pain, hemophilia should be considered.

Once diagnosed, you should go to the doctor every 6 months, do not inject muscle, acupuncture or massage, avoid using drugs that cause bleeding such as aspirin, do musculoskeletal exercises to reduce bleeding.

When encountering bumps that cause bleeding, it is necessary to immediately go to a medical facility for immediate treatment of the wound.

Thanh Hien