Congenital heart disease

Also called Heart defect, Hole in the heart, CHD

The commonest birth defect. Most children now reach adulthood, and the biggest current problem is what happens when they leave children's services.

What it is

A heart or major blood vessel that formed differently before birth. It affects around 1 in 100 babies, making it the most common group of birth defects.

It covers everything from a small hole that closes by itself to complex conditions needing several operations in the first years of life. Many are picked up on the 20-week scan or the newborn examination; some are found later.

Survival has transformed. Most children born with a heart defect now live into adulthood, and there are more adults than children living with it in the UK. That success created the problem this entry is really about.

**Nobody is ever cured.** Repaired is not the same as fixed, and adults need lifelong specialist follow-up for rhythm problems, valve problems and heart failure. A large number are lost to follow-up in their late teens and twenties, and present years later much more unwell than they needed to be.

It is more common in Down's syndrome, 22q11 deletion syndrome, Turner syndrome, Williams syndrome and Noonan syndrome, which is why those diagnoses trigger a heart assessment.

Signs you might notice

In a baby: rapid or laboured breathing, sweating during feeds, taking a long time to feed or tiring before finishing, poor weight gain, blue or grey lips and tongue, and swelling of the eyes, face or hands.

In a child: getting breathless with activity, tiring quickly, poor growth, chest pain, or fainting.

In an adult who was repaired years ago: new breathlessness, palpitations, reduced exercise tolerance, or ankle swelling.

999: a baby that is blue or grey, floppy, or struggling to breathe.

Urgent: fainting, chest pain on exertion, or a sudden drop in what the person can do.

How it can affect day-to-day life

The transition from paediatric to adult services around 16 to 18 is where people fall out of the system. It should be a planned handover to an adult congenital heart disease centre, and it frequently is not.

Dental care matters more than most people realise: some heart conditions raise the risk of infective endocarditis, and good dental health plus telling the dentist is genuinely preventive.

Pregnancy needs planning with the specialist team beforehand, not managing afterwards. For some conditions the risk is significant.

Parents describe a particular exhaustion: repeated surgery, feeding difficulties, and a well-looking child who is not well. Siblings often get overlooked.

Insurance, employment and sport all raise questions that the specialist nurse can usually answer better than a search engine.

Supporting someone well

Do not let follow-up lapse in the teenage years. Ask by name for transition to an adult congenital heart disease centre and get the appointment before leaving paediatrics.

Keep a copy of the surgical history: what was done, when, and by whom. Adults are repeatedly asked and rarely know.

Register with a dentist and tell them the diagnosis.

Ask about pregnancy before conceiving.

Ask what activity is safe rather than guessing, and get it in writing for school.

Ask for the specialist nurse's contact, and for a written plan of what symptoms mean call us.

Where to get help

The paediatric or adult congenital cardiology team, and the specialist nurse.

A GP practice for referral back if follow-up has lapsed. It is never too late to re-enter the system.

British Heart Foundation on 0808 802 1234 for information on individual defects.