Planning for surgery

When your child is diagnosed with a heart condition, their needs are discussed at a joint planning meeting (known as the JCC) held weekly between the cardiologists, surgeons, anaesthetists, nurses and other specialist support staff. During this meeting your child's clinical condition and investigations are discussed by the multi-disciplinary team and a plan for their care is developed.

Once the decision is made that your child will need surgery, your cardiologist will write to you, explaining the options and the proposed plan, with an appointment for your child to be seen by the surgeon in clinic.

The cardiac coordinator will also write to you to tell you that your child has been put on the waiting list.

What will happen at the surgical clinic?

The consultant cardiac surgeon, cardiac nurse specialist, dental registrar and sometimes a research nurse will meet with you to discuss the proposed operation and what to expect. The team will talk to you about a number of things, including:

the type of operation,
why they feel it is important for your child to have this done,
the prognosis without the procedure
the risks and benefits to your child
the approximate timescale for surgery
advice about good dental hygiene to protect your child from infection

This consultation is extremely important as we try to make sure that you are as prepared for the forthcoming operation as you can be. You may want to bring a note book with you with any questions that you have. You may also want to bring someone to this appointment to support you.

It often happens that after the consultation further questions come to mind. If this happens you can phone one of the cardiac nurse specialists to ask them. Alternatively, write down your questions on a sheet of paper and you can ask the surgeon when you meet them again the night before surgery.

When will the operation happen?

Each patient is reviewed according to their needs and we will make a decision about how long it is safe for your child to wait. Urgent or emergency patients will take priority.

Once a date has been decided, the cardiac co-ordinator will let you know and arrange for your child to be seen in the pre-admission clinic. It may take time to arrange a date but if you are concerned about any delay please contact the co-ordinator on 0117 342 8862 who will be able to check for you.

How much notice will we receive when offered a date for the operation?

We try to give you as much notice as possible. If you think you will be available to come in on short notice (72hrs or less), please inform the cardiac coordinator, surgeon or cardiac nurse specialist and you will be placed on a Short Notice list to be called if we have any availability.

Who do I contact if my child becomes sick after they have a date for surgery?

Please contact the cardiac nurse specialist team if your child becomes unwell, or if they are in contact with any children with chickenpox. Once they have the details of your child's symptoms they will notify the appropriate member of the team to decide if this will affect the timing of your child's surgery.

When we receive a date for the operation, will my child need to be seen again before the operation?

When you are offered a date for your child's operation you will also be offered a date for the Pre-admission clinic.

What will happen in the pre-admission clinic?

This pre-admission clinic appointment is to check that your child is well enough for surgery. It is also your opportunity to tell us about any particular needs your child may have, ask any further questions or talk about any worries. The clinic is held every Thursday in the outpatients department here in Bristol. This is often quite a long appointment, taking up to four hours, as it will include a number of investigations such as an echocardiogram, chest X-ray, electrocardiograph, blood tests and nasal swabs.

Our clinical nurse specialists and our play specialists will also talk to you about how they can support you and your child, such as offering distraction during tests or investigations which take place during the clinic.

Can we see the ward before we are admitted?

It may be possible to arrange a visit to the ward as part of your preadmission visit but if not, you can find pictures on the PICU and Ward 32 webpages or on our children's website for younger patients. If you would like to arrange a more detailed tour of the hospital please ask your cardiac nurse specialist or contact LIAISE on 0117 342 8065.

After the surgical procedure, patients typically have a period in the Recovery area, followed by admission to the Paediatric Intensive Care Unit (PICU) and then transfer to the high dependency unit on Ward 32. If you wish to visit PICU in advance, this may be possible once you have been admitted to Ward 32, prior to your child's operation.

What happens if my child's operation date is cancelled?

We take cancelling a patient very seriously and try our hardest not to do this. Unfortunately it may be necessary to cancel an operation from time to time and this usually happens for one or more of the following reasons:

An emergency patient has been admitted and needs to take priority
Previous operations may take longer than expected due to unforeseen circumstances
There may not be enough staff to do the operation safely either in PICU or in theatre
There may not be a PICU bed available
Your child may be unwell

If your child is cancelled in advance, or the date is changed, to the coordinator will be happy to talk to you about the reasons and do our best to rearrange the admission as soon as possible.

What happens if there is a delay?

If your child's surgery has been delayed, their needs will continue to be reviewed by the cardiology and surgical team. If you feel their condition is worsening, please contact your clinical nurse specialist or ask your GP to review your child and write to their consultant cardiologist. During this period we may also need to ask you to come back to the pre-admission clinic to ensure we have up-to-date information to ensure we keep your child safe.

What if my child has additional needs?

Please discuss any additional needs your child has with the team during the clinic appointment. If your child has a disability or complex needs, it may be helpful to complete the hospital passport, if you have not already done so, which will help staff understand the whole of your child's care needs. If you are worried about us jointly managing your child's additional needs during their admission, please speak to your cardiac nurse specialist or contact the LIAISE team on 0117 342 8065.

For more information on what will happen during surgery, please click here.