My child has HHT, what should I know?

About HHT

As you may know HHT ((Hereditary Haemorrhagic Telangiectasia) is a rare a disorder in which some blood vessels do not develop properly.  It can affect adults and children from all racial and ethnic groups and all ages.

This disorder is characterized by focally dilated vessels, which can lead to arteriovenous malformations and serious complications even in young children.

HHT is a genetic condition. A child having at least one parent (mother or father) suffering from HHT disease has 50% risk of suffering from this condition.

If the disease is discovered early, effective treatments are available.


How to care for your child?

If your child has unexpected and recurrent nosebleeds, there are some things that you can do to prevent the nosebleeds:

  • Make sure the inside of your child’s nose stays moist by gently applying a nasal moisturising cream
  • If your child is congested, put a little saline solution (sold in pharmacies) in each nostril
  • If your child needs to blow his nose, encourage to do it gently, one nostril at a time, and to sneeze with his mouth open.
  • Teach your child not to put his fingers in his nose and keep his nails short.

It is also recommended to look out for possible anaemia.

If you notice that your child is lacking in concentration and has low energy, these could be signs of low oxygen saturation.


What to do in case of accident?

If there is continuous bleeding and signs of haemorrhagic shock, seek emergency medical help (999). Make sure the blood is flowing freely from your child’s nose and place him in the recovery position (on the side).


When to consult a doctor or an emergency centre?

If your child’s nose is still bleeding after 20 minutes of pinching his nose and tilting his head slightly forward, it is recommended to consult a doctor or make an appointment at A&E.

Also, if the nosebleed comes after a trauma to the head/face or a fall, it is recommended to consult a health professional.


Keep a normal life as possible and communicate

It is essential not to hold your child back just because he has HHT. Let him do activities and enjoy his life. If any doubt about the kind of activities, talk to your GP to check if there is any activity to avoid.

Also, make sure your child has a good and healthy diet, full of iron and vegetables and that he keeps hydrated by drinking water.

Your child may not understand the situation and may be scared. Reassure him and explain what is happening: it is important to use simple words to explain the illness and encourage your child to ask questions.

If you avail of babysitting services, make sure you inform the babysitter of his condition and what to do in case of problem.