Finding Out About a Heart Problem Before Your Baby is Born?

Finding out you are having a baby can be one of the most wonderful moments in your life. Being told that your unborn baby might have a heart problem is a very frightening thing to hear. In the North West of England, North Wales and the Isle of Man we have special services to help support you through this worrying time. The information below will help you understand what will happen and who will be there to help and support you. Finding out as much as possible may help you to cope. Did you know that thousands of babies every year are born in England with a heart condition?

What is a congenital heart problem?

Congenital heart disease affects about eight in every thousand babies that are born. Congenital heart disease refers to any problem with the heart that develops before birth and includes:

  • problems with how the heart has formed in early pregnancy causing abnormal “plumbing”
  • problems with the electrical activity causing heart rhythm problems
  • problems with how the heart muscle pumps causing it to become weak

Congenital heart disease can range from very simple defects that may not cause a problem (such as small holes in the heart) to very serious defects that may be life threatening. Heart conditions vary and may be very complicated. Finding out that there is a problem with your baby’s heart early in your pregnancy allows you to think about what you would like to do. It is important to plan for when your baby arrives and how they should be cared for after they are born. This makes sure that your baby is given the best possible care, by the right people in the right place.

Visit Tiny Tickers >

A national charity supporting families and staff.  They want to improve the number of babies found to have a heart problem before they are born.  By finding out about serious heart conditions early they can help to improve how they are cared for.

Are you pregnant?

You will need to let your GP know and book into your local pregnancy services as normal.

You will need to let your GP know and book into your local pregnancy services as normal.

You will also need to let the cardiac maternity service in either Liverpool or Manchester know that you are pregnant. If you don’t know how to do this, then call the Adult Congenital Heart  (ACHD) Team on 0151 254 3333 and let them know that you are pregnant. They will arrange for you to be seen in the joint cardiac maternity clinic.

It is important to tell your cardiac maternity service or the ACHD Team about any medication you are taking. This is to make sure they are safe to take whilst you are pregnant. It is very important if you are taking tablets to thin the blood, for example a drug called Warfarin. They will ensure that you receive an urgent appointment to check.

How do we find out that your baby has a heart problem?

Every pregnancy carries a small risk of having a baby with a heart problem. For most people, the 20-week scan will help to reassure you that your baby is developing normally.  This scan will check that your baby’s heart is developing as expected.  Many heart problems can be picked up at this 20-week scan, but it is not possible to pick up every heart problem.

This 20-week scan will be performed at your local hospital. It normally takes about 30 minutes and does not cause any harm to you or your baby. The person performing the scan is called a Sonographer. They are trained to recognise what is normal. When they see a problem, they might not be able to tell you what it is they have seen or what it means at the time of the scan.

You have been told there might be a problem with your baby's heart

You will be referred to a Specialist Fetal Cardiology Team to find out more about your baby’s heart problem. Fetal Cardiology Teams specialise in looking after babies with a heart problem before they are born. These clinics happen in Fetal Medicine Departments. In the North West of England, North Wales and the Isle of Man there are two hospitals who provide this specialist care. They are based at either The Liverpool Women’s Hospital or St Mary’s Hospital in Manchester. At these clinics you may meet the following people:

  • Children’s Heart Specialist is a doctor who specialises in heart problems that are found before the baby is born
  • Specialist Midwife who is trained to look after and support pregnant women who have been told there is a problem with their unborn baby
  • Fetal Cardiac Specialist Nurse who is trained to support pregnant woment and their partners, as well as babies born with a heart problem
  • Paediatric Congenital Heart Nurse Specialist who is trained to look after babies with a heart problem

The specialist heart doctor will draw pictures of your baby’s heart. They will explain how the normal heart works and will help you understand what they think is wrong. The details of your baby’s heart problem and what treatment or tests they might need will also be explained. They will talk to you about what you would like to do and explain the different choices that you may have.

There are still some very complex heart problems seen before birth that cannot be fixed back to a normal circulation. In cases of severe heart disease everything will be discussed with you including stopping the pregnancy. They work closely with palliative care teams and the option of compassionate care after your baby is born may also be discussed.

It is important to check for other problems

When we find a heart problem it is important to check your baby for any other problems. You will see a Fetal Medicine Consultant who will check your baby for any other problems.

Some types of heart problems can be linked with genetic or chromosomal problems and this will be discussed with you. These conditions can’t be diagnosed by just scanning your baby and you may be offered an amniocentesis test to allow genetic testing. Amniocentesis is a test to check if you baby has a genetic or chromosomal condition. It involves removing and testing a small sample of cells from the amniotic fluid. This is the fluid that surrounds the unborn baby in the womb (uterus). These conditions may be complex and sometimes cause other issues that can’t be detected on a scan such as learning difficulties or developmental delay.

Further information about fetal medicine services

Fetal Cardiology Service at St Mary’s Hospital in Manchester

0161 276 6385

Fetal Medicine Service at Liverpool Women’s Hospital

0151 702 4072

Fetal Cardiology Service (Alder Hey Children’s Hospital)

0151 252 5291

Finding out that your baby has a heart problem will be a shock and you will need time to come to terms with the information that you have received. The time taken to reach the best decision for you and your family will vary.  Some reach a decision quickly and for some, the decision takes longer. Your Specialist Midwife and the Specialist Nursing Team are always available for support and help, or just to provide a listening ear.  They are experts in giving you information and support at this very difficult time.  

It can be hard to understand the details of your baby’s diagnosis. Remember to ask for help to understand anything you are unsure about.  They can arrange for you to see where your baby will be transferred to, especially if they need an operation or procedure soon after birth. They can be contacted via:

Alder Hey Children’s Hospital (Liverpool) :
0151 252 5291

  1. Gill McBurney (Fetal Cardiac Nurse Specialist)
  2. Marie Murphy (Fetal Cardiac Nurse Specialist)

Royal Manchester Children’s Hospital (Manchester):
0161 701 0664

  1. Clair Noctor (Lead Paediatric Congenital Heart Nurse Specialist)

What happens next?

We hope that finding out about your baby’s heart problem before they are born will help make sure they get the best care possible.  It also gives you and your family time to prepare.

Extra scans and checks may be needed during your pregnancy

Continue with your normal obstetric care at your local hospital

You will be seen regularly by the Fetal Medicine Team and a plan will be made for the delivery of your baby

What happens after my baby is born?

My baby has a heart problem.  They don’t need treatment straight after they are born

You have been told that your baby has a heart problem.  They do not need immediate treatment as soon as they are born.  It is likely that you will be able to have your baby at your local maternity  hospital as normal.

Once your baby has been born, they will be checked by a local Consultant who has a special interest in babies with heart problems. Your baby will be seen in a local cardiac clinic to see how they are doing.

It is possible that your baby will do well and will not require any immediate procedures or operations and treatment may be planned at a later stage in their life. Some babies do not need any procedures or operations during childhood.

My baby has a serious heart problem. I am planning to have my baby at St Mary’s Hospital in Manchester

You have been told that your baby has a serious heart problem that may need urgent treatment after they are born. You may be advised to have your baby at St Mary’s Hospital in Manchester. They have specialist heart doctors on site who can monitor your babies heart condition carefully.

When the time is right, they will discuss your baby’s medical condition with the  specialist heart team at Alder Hey Children’s Hospital to plan their further treatment. This may involve being transferred to Alder Hey Children’s Hospital for an operation or a procedure.

Find out about the neonatal Unit at St Mary’s Hospital

My baby has a serious heart problem and they may need urgent treatment soon after they are born. I am planning to have my baby at The Liverpool Women’s Hospital.

You have been told that your baby has a serious heart problem that needs immediate treatment soon after they are born.  You may be asked to have your baby at The Liverpool Women’s Hospital. This is to make sure they receive the right care and can be taken to Alder Hey Children’s Hospital safely and quickly.

Find out about the neonatal services at the Liverpool Women’s

My child needs an operation or a procedure

All babies and children who live in the North West of England, North Wales and the Isle of Man who need to have a heart operation or procedure will be treated at Alder Hey Children’s hospital in Liverpool.

My child needs an operation – what to expect

 

My child needs a procedure – what to expect

 

What questions should I ask?

Sometimes it can be hard to think clearly to ask the right questions. You will have lots of opportunities to do this so take your time and contact the team whenever you need any help. The following list may help?

*    What is the name of the heart problem?

*    Can you explain it to me and draw a diagram?

*    How do you treat this condition?

*    Will my baby need to have an operation or a procedure soon after birth?

*    What will happen after my baby is born and can I stay with them?

*    How quickly do babies get better after an operation?

*    Will my baby grow and develop normally?

*    Will my child grow to be an adult and what should they expect?

*    What is the quality of life like for children with this condition?

How do I know that my baby is going to receive the best care?

The diagnosis and treatment of heart problems have improved over the past few decades with major advances in both surgical and keyhole (catheter) procedures.

Surgical outcomes in the UK are some of the best in the world. 90% of children born with a heart problem survive into adult life. There are now specialist adult congenital heart services in the UK to look after adults who have grown up with a heart problem.

Click here to see the data from congenital heart centres in the UK.

Can I get a second opinion?

Rarely the baby’s heart condition can be very complicated. When this happens the decision as to how best to treat it may not be straight forward. Sometimes a second opinion from another congenital heart centre in the UK might be helpful. The team will discuss with you what options are available and will help organise this for you if needed.

Other useful links

Please click here for more charities that you may find helpful.

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This information can be made available in alternative formats such as easy read or large print and may be available in different languages, upon request. If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email northwestchdnetwork@alderhey.nhs.uk and tell us what you need.

COVID-19 Advice for North West CHD Network: Advice for patients and families affected by congenital heart disease and children with other heart conditions pleaseclick here