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?
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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.
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?
How do we find out that your baby has a heart problem?
You have been told there might be a problem with your baby's heart
It is important to check for other problems
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
The Fetal Cardic Service is part of the Cardiac Service at Alder Hey Children’s Hospital
0151 252 5642
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 your baby’s diagnosis. Remember to ask for help to understand anything that you are unsure about. The nurse specialists can arrange for you to see where your baby needs an operation or procedure soon after birth. Their contact details are:
Fetal Cardiac Nurse Specialists at Alder Hey Children’s Hospital (Liverpool) :
0151 252 5642
Messages left are checked daily at midday (except bank holidays and weekends)
- Gill McBurney (Fetal Cardiac Nurse Specialist)
- Marie Murphy (Fetal Cardiac Nurse Specialist)
Royal Manchester Children’s Hospital (Manchester):
0161 701 0664
- 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 your baby is born?
My baby has a heart problem. They don’t need treatment straight after they are born
My baby has a serious heart problem. I am planning to have my baby at St Mary’s Hospital in Manchester
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.
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 will be treated at Alder Hey Children’s hospital in Liverpool. Find out more about their cardiac service here
My child needs an operation
When your baby needs an operation you will be given lots of information and support. Here is the leaflet explaining what is involved. Please speak to your nurse specialist to help you understand what it means for you and your baby.
My child needs a procedure
When your baby needs a procedure you will be given lots of information and support. Here is the leaflet explaining what is involved. Please speak to your nurse specialist to help you understand what it means for you and your baby.
What questions should I ask?
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. 95% 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.
Request an accessible format.
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.