Caring for a baby or child with a heart condition can feel overwhelming. This information aims to provide you with clear, compassionate guidance on understanding your child's condition, how heart problems are detected, the treatment options available, and the specialist care your child can receive. Our goal is to help you feel informed, reassured, and supported during this challenging time.
Sometimes a heart murmur can be found by chance when a doctor listens to your child’s chest. A murmur is an extra heart sound that the doctor can hear. It is very often ‘innocent’ which means the heart is completely normal and there is nothing to worry about. Only a small number of children have something more serious wrong with their heart. Your child will only be referred to a heart specialist for further assessment if this is required.
The specialist heart doctor will draw pictures to help you understand. They will explain how the normal heart works and will help you understand what they think is wrong with your baby’s heart. What treatment options 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.
When a child or baby is unwell it may be because they have an underlying heart problem. If this is suspected your child should be referred to a heart specialist who will arrange for them to be seen in clinic. Referrals are assessed and are seen according to how serious the problem is.
This is a test using an ultrasound machine to look at how the heart is pumping and to look at the heart valves and blood vessels. It is sometimes called an ‘echo’ and is usually performed when your child comes to the clinic. Ultrasound scans don’t hurt but to get the clearest pictures we need to use jelly on your child’s skin, which they might find cold and sticky. (picture of a child having an echo)
This involves attaching electrodes (special stickers) to the arms, legs and chest area. It records the electrical activity of the heart. This is often done each time you come to the clinic. It can sometimes be done as recording over a day or up to a week.
(picture of a child having an ECG)
A CT scan uses X-rays to look at the heart and blood vessels. It is used when certain areas of the heart or blood vessels cannot be seen well on the echo scan. Sometimes, they may need to give your child an injection of a special dye that makes the images even clearer. They can use ‘magic cream’ to numb the skin beforehand. You can stay with your child during a CT scan.
An MRI scan uses a strong magnetic field. It’s important that your child doesn’t have anything made from metal either on them or in their pockets. An MRI scan takes longer than other scans, but patients can watch a film or listen to music to help them relax. It can make quite loud banging noises which are quite normal. If your child is too young or unwell to be able to lie still during an MRI scan, they may need a general anaesthetic.
(Picture of a child having an MRI scan)
The treatment for heart conditions depends on the type and severity of the heart problem. Many babies diagnosed with a heart problem don’t need any treatment. Some children may require medication only and others may need to have a heart operation. A catheter procedure can be done instead of surgery in some cases. Your heart doctor will explain to you what is wrong with your child’s heart and what treatment options are available. Some children will need life long care and follow up and may need further treatments as they grow up into adult life.
Unfortunately, there are still some very complex heart problems that cannot be fixed back to a normal circulation. In cases of severe heart disease all options will be discussed with you including the option of referring your child to palliative care. In severe cases of heart disease parallel care is offered. This is where you are referred to the palliative care team whilst your child is receiving active treatment for their heart problem. This is where everyone is hoping for the best outcome but also preparing for the possibility that your child might not survive. The heart team and the palliative care team are both experts at supporting you at this very difficult time.
The treatment for heart conditions depends on the type and severity of the heart problem. Many babies diagnosed with a heart problem don’t need any treatment. Some children may require medication only and others may need to have a heart operation. A catheter procedure can be done instead of surgery in some cases. Your heart doctor will explain to you what is wrong with your child’s heart and what treatment options are available. Some children will need life long care and follow up and may need further treatments as they grow up into adult life.
Unfortunately, there are still some very complex heart problems that cannot be fixed back to a normal circulation. In cases of severe heart disease all options will be discussed with you including the option of referring your child to palliative care. In severe cases of heart disease parallel care is offered. This is where you are referred to the palliative care team whilst your child is receiving active treatment for their heart problem. This is where everyone is hoping for the best outcome but also preparing for the possibility that your child might not survive. The heart team and the palliative care team are both experts at supporting you at this very difficult time.
If everything is stable and your child is doing well your heart doctor may choose to review your child in the clinic at regular intervals.
Your heart doctor may decide that more tests are needed to understand how the heart is working. This sometimes results in a decision to add or change medications or treat the heart condition with a heart operation or procedure
This means that the doctors do not think an operation, or a catheter procedure is needed at this time. They will continue to monitor your child in the clinic. They may recommend adding to or changing their medication.
This means that your child is being considered for a heart operation. You will receive an appointment to attend a pre-assessment clinic where you will have the opportunity to meet one of the Heart Nurse Specialists. They will give you lots of practical information about having a heart operation and what to expect. They will discuss with you the operation that is being planned. Your child will be put on the waiting list for a heart operation at Alder Hey Children’s Hospital.
Click here for more information Cardiac Surgery Information Leaflet – Alder Hey Children’s Hospital Trust
This means that your child needs a catheter procedure (a keyhole procedure performed through the blood vessels in the groin). A catheter procedure can be used to treat structural problems with the heart and electrical problems with the heart rhythm. You will receive a letter informing you of what procedure is required. and will be seen in a pre-admission clinic by the Heart Nurse Specialist. They will explain all about the procedure and what to expect. Your child will be listed for this procedure at Alder Hey Children’s Hospital.
Click here for more information: Cardiac Catheterisation – Alder Hey Children’s Hospital Trust
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.
