Congenital heart disease covers a range of heart problems and conditions that babies are born with. Some of these conditions can be diagnosed while the baby is still in the womb.
The exact cause of congenital heart disease is unknown, and may vary from case to case. But causes can include:
- infections during pregnancy
- use of certain medications
- drug and alcohol abuse
- having a parent with a congenital heart defect.
Types of congenital heart disease
There are many types of congenital heart diseases that we treat at the Trust, which have listed below. These links will give more information about the condition from the BHF website.
An echocardiogram is the most common test used to diagnose a heart defect. We may also do a chest x-ray or an ECG. The tests requested will be specific to your child’s heart defect.
Your child’s cardiologist will explain to you what the diagnosis is and what it means for your child.
Our cardiac nurse specialists go to the clinics to meet families whose baby or child has been diagnosed with a heart defect. They will spend time with you, making sure you understand what is happening and to give you written information.
The nurse specialist will be the point of contact for you and will give you their contact details in case you have questions or concerns.
They will also help organise any further care your baby will need. This could be contacting your health visitor, community teams or your paediatrician in your local hospital.
Congenital heart defects range in severity and the type of treatment your child needs will depend on the severity of the defect.
Some children with a congenital heart defect may need no treatment at all. This is because the defect is minor and is not causing any symptoms or problems for the child. We will still get you to take your child for follow-up care. This will be with a paediatric cardiologist or a paediatrician with expertise in paediatric cardiology.
But CHD is often serious and will need some form of treatment. This can range from medication to surgery, and in a small number of cases a heart transplant may be necessary.
Your consultant cardiologist will always discuss your child’s treatment options with you.
What happens if my child or unborn child has a congenital heart defect
Before the baby is born
Most congenital heart disease is diagnosed before the baby is born (prenatally) at the 20-week scan. If your doctor thinks there may be a problem during the scan, they may ask one of the consultants at the Trust to see you and find out more about the problem.
If the problem is serious, we may bring your baby to Royal Brompton Hospital immediately after birth for surgery. This surgery can take place days after the birth.
If the problem is more moderate, we may bring you and your baby you to the day-case clinic at Royal Brompton Hospital. A consultant will discuss treatment options with you and plan for your baby’s care. This will often include some form of surgery at a later date.
If the problem is minor and does not need treatment, we will get you to come to an outpatients clinic at Royal Brompton to check your baby’s progress. Your baby may be monitored for life, to make sure the problem doesn’t get worse and to treat it is it does.
After the baby is born
A heart defect that is not found during pregnancy is usually picked up by a murmur (a noise heard with a stethoscope). This will be soon after birth or at your baby’s six-week check. Your baby will then be referred to a paediatric cardiologist:
at Royal Brompton Hospital
at the children’s outpatients at Harefield Hospital
in one of the outreach hospitals we attend.
About the congenital heart disease (children) team
The team at the Trust that looks after children and young people with congenital heart disease is made up of cardiac and fetal consultants and specialist nurses, and surgeons.
Professor Piers Daubeney – consultant paediatric and fetal cardiologist
Professor Alain Fraisse - consultant paediatric cardiologist
Dr Rodney Franklin - consultant paediatric cardiologist
Dr Sylvia Krupickova – locum consultant paediatric cardiologist
Dr Nitha Naqvi– consultant paediatric cardiologist
Dr Michael Rigby– consultant paediatric cardiologist
Dr Giselle Rowlinson – locum consultant paediatric cardiologist
Dr Zdenek Slavik – consultant paediatric cardiologist
Dr Jan Till– consultant paediatric electrophysiologist
Inga Voges - consultant paediatric cardiologist
Dr Julene Carvalho– lead consultant fetal cardiologist
Dr Margarita Bartsota - consultant fetal cardiologist
Dr Victoria Jowett - consultant foetal cardiologist
Mr Olivier Ghez–paediatric cardiac surgeon
Professor Hideli Uemura- cardiac surgeon
Dr Guido Michielon- paediatric and congenital cardiac surgeon
Mr Babulal Sethia– cardiac surgeon
Mr Darryl Shore- cardiac surgeon
Clinical Nurse Specialists (CNS)
Virginia Castro Meira - lead nurse for children’s clinical nurse specialists in paediatric cardiology: fetal, paediatric and transition
- Julieta Lumanisakio - clinical nurse specialist in fetal cardiac care
Sophie Dopson - clinical nurse specialist in fetal cardiac care
- Pilar Moura - clinical nurse specialist in fetal cardiac care
- Sarah MacCarthy-Morrogh - clinical nurse specialist in fetal cardiac care
- Gemma Lewington - outpatient sister/ clinical nurse specialist in children’s cardiac care (based at Harefield Hospital)
- Francesca Damant - clinical nurse specialist in children’s cardiac care
- Mabel Adeyefa - clinical nurse specialist in children’s cardiac care
- Fran Cox - clinical nurse specialist in children’s cardiac care
- Liz Johnson - clinical nurse specialist in children’s cardiac care
- Rosanna Meryon - clinical nurse specialist in children’s cardiac care
- Loredana Haidu - clinical nurse specialist in transition cardiac care
- Danielle Horler - clinical nurse specialist in children’s cardiac care
- Michelle Lambell - clinical nurse specialist in transition cardiac care
If you have any questions or concerns about your child’s treatment at the hospital you should contact one of our nurse specialists.
Telephone: 020 7349 7727
Telephone: 01895823 737, ext 6261 or 5573
Below are links to organisations that provide support and useful information about congenital heart disease.
Below are patient information leaflets that will be useful for patients with congenital heart disease and their parents:
Cardiac catheterisation (for children) - July 2015 (PDF, 1.3MB)
Paediatric critical care - information for parents and carers - Royal Brompton Hospital - September 2014 (PDF, 506KB)
When your child goes home after heart surgery - Royal Brompton Hospital - July 2016 (PDF, 487KB)
After your heart operation - Royal Brompton Hospital - January 2018 (PDF, 2.2MB)
Innocent heart murmur - July 2014 (PDF, 370KB)
Congenital heart disease transition clinic (PDF, 489KB)
Read stories from patients or parents of patients who have been treated for some form of congenital heart disease (CHD) at the Trust.