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Outpatient Visit

Children that have heart disease are often discovered with congenital heart disease very early on and you will meet your surgeon:

  1. Antenatal – Before the birth of your child
  2. Postnatal – After the birth of your child in hospital
  3. Children's outpatients
  4. Later in life as an adult - ACHD (Adult Congenital Heart Disease)

Your first visit with the surgeon may be in hospital or as an outpatient.


Congenital heart disease may initially be suspected during a routine ultrasound scan of the baby in the womb. Hospitals in England offer all pregnant women at least 2 ultrasound scans during their pregnancy: at 8 to 14 weeks and between 18 and 21 weeks.

The first scan is sometimes called the dating scan to estimates when your baby is due based on the baby's measurements. The second scan is offered to all pregnant women between 18 and 21 weeks of pregnancy. This scan checks for 11 physical conditions in your baby. It is during this scan that some heart diseases are detected in the foetus and you will be referred to a foetal cardiologist who will perform a more detailed scan of your baby’s heart to try to confirm the exact diagnosis.

This may also be undertaken if there's a family history of congenital heart disease or where there's an increased risk.

However, it's not always possible to detect heart defects, particularly mild ones, using foetal echocardiography.

If your baby has a confirmed diagnosis of CHD, the specialist team will offer you extra ultrasound scans to monitor your baby as well as more detailed monitoring of your baby’s well-being before they are born. 

The specialist team will also make plans for your delivery and explain to you what usually happens after your baby is born.

If the condition will require immediate treatment after birth, you will be offered the chance, during your pregnancy, to speak with different cardiac specialists and to visit the hospital you will be referred to and your child will be treated.

Babies with critical CHD will need specialised medical attention in a unit that is experienced in caring for babies with CHD. These babies will need treatment including surgery after they are born, usually before their first birthday.

More information can be found on the UK Government Website.



Serious congenital heart defects usually become evident soon after birth (1-6 weeks) or during the first few months (3-6 months) of life. Signs and symptoms could include:

  • Pale grey or blue skin colour (cyanosis)
  • Fast breathing
  • Swelling in areas around the eyes
  • Bloated abdomen
  • Poor weight gain
  • Shortness of breath and sweating during feedings

Less serious congenital heart defects may not be diagnosed until later in childhood, because your child may not have any noticeable signs of a problem. If signs and symptoms are evident in older children, they may include:

  • Easily becoming short of breath during exercise or activity
  • Easily tiring during exercise or activity
  • Fainting during exercise or activity
  • Swelling in the hands, ankles or feet

Once you have met the specialist cardiologist, treatment options available for your child will be discussed with you and your family. In a good proportion of cases, a follow up appointment will be organized, as the defect might not need any treatment. In other cases, further tests and scans will be arranged to have a complete understanding of the diagnosis. Once the diagnosis will be complete, if your child will need any treatment, the tests and scans performed will be reviewed by the whole cardiac team, comprising cardiac surgeons, interventional cardiologists, specialist cardiologists and specialist cardiac radiologists, called Multi-Disciplinary-Team (MDT). The MDT meets once a week and all the details pertaining to your child’s condition, including scans and echocardiogram and clinical condition will be reviewed and a treatment plan with timing for it will be formulated. This includes any plan for surgery or less invasive interventions, or just a follow up to allow further evaluation while your child grows. All the above information and plans will be discussed with you in details during a follow up appointment. You will also meet a Cardiac Nurse Specialist who will be able to answer most of your questions and who will liaise with the cardiac team for any further clinical needs.

Most of the Centres around the country offer tours of the unit where your child will be admitted, ahead of the admission, so to familiarise with the Hospital environment.

If surgery has been contemplated, this can happen soon, if the condition requires urgent attention to prevent further deterioration. In this case your child might be kept in hospital for further treatments during the same admission, till the date of surgery which usually is in the following week or so. You will have the chance to speak with all the relevant clinicians and specialists who will look. More often, surgery is planned in advance in the following months; hence your child will be discharged home and will be readmitted at an agreed date for the procedure.

If you child has been diagnosed with a congenital heart defect (CHD) you will be referred to meet a specialist cardiologist in a specialist centre. For a list of UK Centres in the different region networks, please see below:

North Wales, North West, Isle of Man:



North East and North Cumbria:

Yorkshire and Humber:

East Midlands:

London Royal Brompton:

London Guys, and St. Thomas’ Evelina

Thames valley and Wessex:

South Wales and south West:

West Midlands: to be provided



Eventually you and your baby will see a surgeon with experience in treating congenital heart defects. Here's some information to help you get ready for the appointment.

What you can do

Make a list of:

  • Symptoms you've noticed in yourself or your child, including any that may seem unrelated to a heart defect
  • Important personal information, including family history of congenital heart disease, illnesses the mother had during pregnancy or behaviours, such as smoking, during pregnancy
  • Questions to ask your doctor

Take a family member or friend along, if possible, to help you remember the information your doctor gives you.

For a congenital heart defect, questions to ask the cardiologist include:

  • What tests are needed?
  • What treatments are available, and which do you recommend?
  • Will this require more than one surgery?
  • How can I make myself or my child more comfortable?
  • Are there restrictions to follow?
  • If I get pregnant again, is there a way to prevent this from happening again?
  • Are there brochures or other printed material that I can have? What websites do you recommend?

Don't hesitate to ask other questions.


ACHD (Adult Congenital Heart Disease)

You may be followed up and need further surgical procedures in your adult life.

The following documents may be helpful to you:

Physical activity for Patients with Adult Congenital Heart Disease (ACHD)

Information on current Coronavirus information