1 in every 125 babies born in the UK has a heart defect.
Not all heart conditions can be seen before the baby is born. Sometimes they are found at later scans or after the baby is born.
If the sonographer who scans you suspects the baby may have a heart condition, they will refer you to a specialist team.
This can be a worrying time for you and we hope this information gives you some insight into what to expect. It is important to remember you are not alone.
Different hospitals have different referral methods: some will initially refer you to their own Fetal Medicine Unit for a second opinion, some may ask the screening specialist to see you first and some will refer you straight to a specialist team at a tertiary centre. Depending on where you live, you may have to travel some distance to your nearest specialist centre.
There are different types of heart conditions and they vary in seriousness and need to be looked at individually. Some less serious conditions include holes in the heart which mean that once the baby is born, the hole allows oxygenated and deoxygenated blood to mix.
Other more serious conditions, known as critical congenital heart disease (CCHD), can occur when the heart hasn’t formed correctly, and the baby may need medication or surgery soon after birth or within the first year of life.
At your specialist appointment, you will be scanned again to confirm whether your baby does have a heart condition.
Sometimes, the specialist scan finds that the baby’s heart looks structurally normal and is working well, and no more tests are needed.
The team consists of many people and there may be more than one person in the room with you during your scan. You may hear lots of medical terminology, but everything will be explained to you at the end of the scan.
Below is a list of some of the people who you may meet at your appointment.
• Consultant Paediatric/Fetal Cardiologist
• Consultant in Feto-Maternal Medicine
• Specialist/Consultant Sonographer
• Cardiac Physiologist
• Cardiac Liaison Nurse
• Health Care Assistants
• Medical students/ Student Midwives
Once a cardiac diagnosis has been made, you may be moved to another room (a quiet room or a counselling room) where the cardiologist or obstetrician will inform you about the result of your scan and what this will mean for your baby. They may do this with the aid of diagrams describing how your baby’s heart is formed and how it is functioning.
There is no single cause for congenital heart disease (CHD) and often we do not know why it happens. CHD is a condition which usually occurs during the baby’s early development. Parents often ask if there was something they did or did not do which caused the heart condition. The answer to this is usually ‘no’.
Some heart defects can be linked with other conditions such as chromosomal or genetic conditions and you may be offered the choice of having an amniocentesis test to determine if this is the case for your baby. The NHS website has more information about the amniocentesis test.
Sometimes, the amniocentesis can be done on the same day at the specialist centre, although, you do not need to make any decisions on the day.
Only you know what the best decision for you and your family is.
You will be given a written report with a diagnosis on it and the contact details of a cardiac liaison nurse for if you have any questions after your appointment. The report will also contain a plan of care for the rest of your pregnancy, delivery and after baby is born.
The specialist unit may suggest follow up appointments to scan you again later in the pregnancy. This will be to keep a close watch on how your baby’s heart is growing and functioning.
Babies with less serious heart conditions will be able to be born at their local hospital.
Babies with critical CHD need to be born in a maternity unit with a neonatal intensive care unit (NICU) on site. This is because the baby will need specialised medical or surgical care in a unit that is experienced in caring for babies with CHD. You may be offered a chance to look around the NICU and also visit the paediatric surgical unit.
It may be useful for you to watch our video about how a baby’s heart grows before you go to your appointment, as your specialist will need to explain this to you:
The charity ARC offers support and non-directive guidance for parents who have been told their baby may have or has an anomaly. You can find their website here.
If there is anything more we can do to support you at this worrying time, please email us at email@example.com
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