World Hemophilia Day 2014: Dealing with hemophilia in children

It's not a pleasant experience for a parent when their baby is in distress, even when she suffers from a cold or a cough. So imagine a parent's plight when they see their baby suffer from a condition

Debjani Arora | Updated: April 10, 2015 1:39 am

It’s not a pleasant experience for a parent when their baby is in distress, even when she suffers from a cold or a cough. So imagine a parent’s plight when they see their baby suffer from a condition like hemophila – a rare bleeding disorder that prevents blood from clotting. This means that even a small cut can be life-threatening to your baby. Now if your baby is diagnosed with this condition don’t blame yourself for it. Instead focus your energies in preventing injuries to your baby which can aggravate bleeding and help your child manage and live with the condition well.

The early signs

The signs and symptoms of hemophilia vary depending on its severity. Following are the signs that can indicate the onset of this bleeding disorder:

It is rare to diagnose hemophilia in children below six months of age as they are unlikely to suffer an injury that could lead to bleeding. But take a closer look at the site of their vaccination. Your child may develop bruises at the site of the shot. If that is the case, ask your doctor if you can use ice packs to reduce the bruising and ease the discomfort. Since most immunizations are performed subcutaneously or given beneath the skin to avoid bleeding in children, such bruising should raise an alarm. (Except the BCG vaccination where bleeding is expected to happen following the shot)

In case of male babies, there might be excessive bleeding during circumcision if the baby suffers from this condition. Also a very low percentage of newborns can suffer from internal bleeding in the skull due to hemophilia.

When your baby starts to crawl or walk, the symptoms of the condition can become more prominent. You may notice bruises on the stomach, chest, buttocks and back. The most common type of bleeding in hemophilia involves muscle and joints. So a child with hemophilia might refuse to use or move the affected joint due to swelling and pain. Recurrent joint bleeding can also lead to chronic damage too.

For a little older kids you might also notice signs like prolonged nosebleeds, excessive bleeding from biting down on the lips or tongue, excessive bleeding following a tooth extraction or loss of a tooth, excessive bleeding following surgery, etc. In very rare cases there can also be blood passing through the urine leading to a condition called hematuria.

Diagnosis and treatment

If there is a pattern of bleeding and bruising you notice in your child, get it checked by the doctor and tested to be sure of your baby’s health status. To diagnose the condition your doctor might ask for a series of blood test like a complete blood count (CBC), prothrombin time (PT), activated partial thromboplastin time (PTT), factor VIII level, and factor IX level.

Although hemophilia is a lifelong condition which has no cure, but it can be successfully managed with proper treatment and therapy. Treatment for hemophilia is as follows:

Factor replacement therapy: In this treatment method, periodic infusion of the deficient clotting factor is sent into the child’s bloodstream intravenously. Once the clotting factor is infused, it begins to work quickly and helps prevent joint damage. Although these treatments are effective, they are also expensive. Between 14% and 25% of children with severe hemophilia develop inhibitors (antibodies to the clotting factor). Their bodies view the clotting factor as a foreign substance and develop antibodies that block its clotting action. This can make the hemophilia difficult to treat. One method of overcoming the inhibitors is to increase the body’s tolerance to the clotting factor by carefully infusing increasing amounts of the clotting factor over time.

Medications: Medication like recombinant factor VII helps to deal with inhibitors. It activates another part of the coagulation process directly and bypasses the deficiencies.

What you can do

From a very early age ensure to teach your baby to be careful and ways to deal with the condition. Follow these tips to help your child cope better:

Stick foam pads to the sharp edges of counters and coffee tables once your baby starts to crawl or walk around. If possible limit use of tables, stools or other furniture with sharp edges while your child is learning to walk. Foam padding on walkers will help protect elbows.
Block gates and stairs to avoid falls. Use netted covers on cribs to serve the same purpose.
Place non-skid strips on the floor of the shower or bathtub. Help your child in and out of the tub until the child is old enough to manage without falling.
Sew padding into the knees and seat of your toddler’s pants to reduce bruising.
Make sure your toddler wears shoes to protect his feet. High top sneakers provide good ankle support.
Athletic elbow and knee pads also help to protect against joint bleeds caused by falls.
Consider getting your child a big wheel tricycle. They are generally more stable and closer to the ground than regular tricycles.
Make sure your child wears a helmet when skating, cycling, etc.
Avoid physical activity that involves rough body contact such as wrestling and hockey.
Try and find a support group and talk to other parents to help your baby cope better socially.
Hand your baby a soft brush and teach him to floss with care, since any injury to the gum can lead to bleeding.

References:

www.kidshealth.org
www.hemophilia.org

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Published: April 17, 2014 5:16 pm | Updated:April 10, 2015 1:39 am

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