With your support most children with congenital heart disease will grow up to become adults and lead full and active lives.

ABOUT CONGENITAL HEART DISEASE (CHD)

Congenital Heart Disease is a heart condition or defect that develops in the womb, before a baby is born.

There are different types of Congenital Heart Disease, a baby’s heart valves may not be properly formed or there may be holes between the chambers of their heart.

Ultrasound scans during pregnancy (usually at the 20 week scan), can be an effective way to detect a congenital heart problem early on, however, sometimes they are not found until after the baby has been born and in other cases, some conditions may not be discovered until the child is older or even an adult.

Because every child and condition is different, Congenital Heart Disease in babies and toddlers can have a range of symptoms. The most common symptoms include extreme tiredness, poor feeding, excessive sweating, rapid heartbeat, breathing problems, chest pain and a blue tinge to the skin. If you notice any of these symptoms in your child, you should seek medical attention.

In this situation, you may be asked to attend another scan with a specialist or referred to a fetal medicine unit, obstetrician or a specialist in cardiac or child medicine.

If a congenital heart condition is confirmed, you should be given a detailed description of the problem, information about any surgery that might be needed, and the overall long-term outlook.

If appropriate, specialist monitoring and care will be provided before, during and after the birth so that your baby can receive tests and treatment as soon as possible. Some heart conditions can now also be treated in-utero (in the womb) before the birth.

In this case, your child may undergo a physical examination and heart tests such as an ECG.

If the diagnosis is confirmed, they will be seen by a paediatric cardiologist, who will manage their care.

You should be given a detailed description of the problem, information about any surgery that might be needed, and the overall long-term outlook for your child.

Thankfully, for the majority of babies diagnosed with Congenital Heart Disease (CHD), their condition is a minor problem which either doesn’t need any treatment, or can be successfully corrected with surgery. Other conditions are more serious and sadly, some children do not survive.

However, thanks to advances in early diagnosis and treatment, most children will grow up to become adults and lead full and active lives.

Affecting one in 125 births, congenital heart disease is an umbrella term used to describe any heart condition or defect that develops in the womb, before a baby is born.

There are many potential causes of congenital heart disease, however usually these are down to complications in the early development of a foetus. Family history and other conditions such as diabetes can slightly increase the chance of a congenital heart defect.

REAL STORIES

Amy’s Story

Amy’s Story

Amy’s daughter received open heart surgery at just 11 weeks old. Amy's little one is now three years old and Amy tells us all about her daughter’s CHD journey to date. Amy is also pregnant and knows her baby is already a heart warrior too. Amy, known online as...

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Beau’s Story #BabyLossAwarenessWeek

Beau’s Story #BabyLossAwarenessWeek

written by mum Tilly-May “Back in February of this year (2024) we went for our 20-week anomaly scan at Bassetlaw. Unfortunately, a clear view of Beau’s heart could not be seen so we were sent to Leeds General Infirmary so the cardiology team there (who are one of the...

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Game4Hearts: Jessica

Game4Hearts: Jessica

Jessica was born with a hole in her heart and had open heart surgery when she was 8 years old. During her time in hospital, gaming provided a huge relief, joy and distraction from her treatment and continues to play a big part in her life.In 2021, Jessica decided to...

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THANK YOU FOR YOUR SUPPORT

Your generosity can really mean the world to children and adults with congenital heart disease across Yorkshire and North Lincolnshire.
Whatever you can give will make a huge difference!

B5, Joseph’s Well
Hanover Walk
Leeds
LS3 1AB

0113 831 4810
info@chsf.org.uk

Registered Charity Number: 1148359
Registered Company Number: 8152970