What happens as my child grows up

Heart conditions in children

As well as needing specialist check-ups throughout their life, there are additional general health factors you need to be aware of as your child grows up.

What is endocarditis?

Infective endocarditis is a rare condition where the inner lining of the heart, (usually one of the heart valves) becomes infected.

Your child may have an increased risk of getting infective endocarditis, both before and after surgery or treatment.

It’s a very serious condition, and the infection can damage the heart valves. If not treated quickly, it can be life-threatening. Fortunately, if it is diagnosed early, most people recover well with antibiotic treatment.

What causes endocarditis?

Endocarditis is most commonly caused by bacteria, or occasionally another type of infective organism in the bloodstream, which settles onto the abnormal structure or defect in the heart.

Although you can’t prevent all bacteria from getting into the bloodstream, these are some simple things your child can do to reduce their risk of endocarditis:

  • maintain good oral hygiene and have regular check-ups with a dentist
  • avoid body piercing and tattooing
  • never inject recreational drugs

If your child develops flu-like symptoms with a temperature which lasts for over a week, you must visit your GP as your child may need a blood test. Every child with congenital heart disease is different, so you may get slightly different advice from their specialist team, which you should always follow.

Make sure your GP knows your child is at increased risk of getting endocarditis by showing them our Endocarditis warning card.

You can order this card by emailing [email protected] or calling the BHF Orderline on 0300 200 2222. 

Pregnancy and congenital heart disease

If you have a daughter with congenital heart disease, you should be aware that pregnancy can carry risks to both the mother and the baby.

It’s important she tries to avoid an unplanned pregnancy. You will need to discuss this with your daughter in whichever way you think is appropriate for her. Your daughter’s specialist team can support you in doing this if you’re unsure or uncomfortable having this conversation by yourself.

People who have a congenital heart condition have an increased risk of having a child with a heart problem as well, though not necessarily the same condition as their parent. This applies to both males and females.

If your daughter chooses to have a baby, it’s best she speaks to her cardiologist first. The pregnancy can then be planned for when your daughter’s heart condition is most stable. Early appointments during pregnancy can be arranged to ensure that your daughter is closely monitored and to look for any congenital heart disease in their baby.

What is the risk of having another child with a congenital heart condition?

If you have a child with a congenital heart condition, there is around a 1 in 40 chance that your next child will have a heart condition too. But the risk varies depending on the type of heart condition your child has.

Because your risk is higher than it is for others, you might be offered a scan at an early stage in future pregnancies, to look at your baby’s heart.

You can ask your midwife or GP for more information on having a scan earlier than usual.

Remember that if you have more than one child with congenital heart disease, their conditions may not always be the same.