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.

Testing

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.

Treatment

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.

Paediatric cardiologists

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

Fetal cardiologists

Dr Julene Carvalho– lead consultant fetal cardiologist
Dr Margarita Bartsota - consultant fetal cardiologist
Dr Victoria Jowett - consultant foetal cardiologist

Surgeons 

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

Specialist nurses

Vidia Johansen- lead nurse for the children’s nurse specialist team
Annabel Bryant - outpatient sister/ nurse specialist in children’s cardiac care (based at Harefield Hospital)
Brooke Campfield- clinical nurse specialist in fetal cardiac care
Susana De Sousa- clinical nurse specialist in fetal cardiac care
Fran Cox- clinical nurse specialist in children’s cardiac care
Christie Fox- clinical nurse specialist in children’s cardiac care
Loredana Haidu- clinical nurse specialist in transition cardiac care
Liz Johnson- clinical nurse specialist in children’s cardiac care
Julieta Lumanisakio- clinical nurse specialist in fetal cardiac care
James Perry- clinical nurse specialist in children’s cardiac care
Virginia Pires Meira- clinical nurse specialist in transition cardiac care
Lynda Shaughnessy- clinical nurse specialist in transition cardiac care

Contact

If you have any questions or concerns about your child’s treatment at the hospital you should contact one of our nurse specialists.

Royal Brompton
Telephone: 020 7349 7727

Harefield
Telephone: 01895823 737, ext 6261 or 5573

Further information

Below are links to organisations that provide support and useful information about congenital heart disease.

The Brompton Fountain
Antenatal results and choices
British Heart Foundation
Children’s Heart Federation
Little Heart Matters
Heartline
Down's Syndrome Association
Action for Sick Children
Max Appeal
SOFT

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.


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