Your child’s cardiac surgery: A guide for parents and carers

There’s a lot to learn, think about and do when your child has been referred for a cardiac (heart) operation. We understand the process can be overwhelming, not just for your child but for the whole family, so we’ve prepared this practical guide so you know what to expect and do at every step of the process.

The key dates

Your child’s surgical journey will include three main dates or milestones. These are:

1. Surgical review appointment
2. Preadmission clinic
3. Admission and surgery

Your child’s health

It’s important that your child is healthy and feeling well for their surgery, as it is not safe for them to have anaesthesia or have surgery if they are sick.

If your child becomes unwell with cold or flu symptoms at any point, please contact your child’s surgical cardiac care coordinator on 07 3068 2597 before bringing them to the Queensland Children’s Hospital for an appointment or procedure.

If your child becomes unwell with cold or flu symptoms in the month before their operation please notify the surgical cardiac care team.

1. Surgical review appointment

The first step after your child has been referred for surgery is their surgical review appointment in the Cardiac Outpatient Clinic (3d) on Level 3 of the Queensland Children’s Hospital. We will contact you with the date and time.

This appointment is an opportunity to meet with the cardiothoracic surgical team who will be involved in your child’s care, including the surgeon and the surgical cardiac care coordinator (a nurse who provide support your family through your child’s surgical journey).

At this appointment, the team will explain what will happen during your child’s operation and answer any questions you might have. If there is anything you don’t understand about the surgery being planned for your child, please do not hesitate to ask the team to repeat or clarify anything that doesn’t make sense to you. The meeting is also an opportunity for your child to ask the doctors and nurses a few questions – this can be a great way to make them more comfortable with the operation they are having.

Tip: Bring a list of questions to ask at the appointment with you so you don’t forget anything.

Your child’s cardiac care coordinator will start planning your child’s surgery admission with you at the surgical review appointment and talk you through everything you need to do to prepare for it. They may also suggest any support services that could help your child and family through the process. For example, if your child is feeling very anxious about their stay in hospital, or the procedures (such as blood tests), they may benefit from some allied health support (e.g. social worker, psychologist, or music therapist). If you feel your child, or their sibling(s) could benefit from allied health support, speak with your cardiac care coordinator.

Booking the surgery date

Within a week of the surgical review appointment, we will contact you by phone to book a date for your child’s surgery and preadmission appointment.

If you live outside of Southeast Queensland, we will try to book all your child’s appointments and surgery date close together where possible, so you only need to make one trip to Brisbane.

A letter with the booked dates will be sent or emailed to you from the cardiac surgery booking office. You need to confirm that you accept these dates within 7 days of receiving the letter/email.

Note: Although we always aim to perform surgeries on the booked date, sometimes emergency surgery cases and other unforeseen circumstances (such as staff illness) mean that it may have to be delayed or rescheduled. As you can appreciate, we always have to prioritise the most urgent surgical cases each day, but we will only reschedule a surgery when it is safe to do so.

Travel and accommodation

Families who live more than 50km from the Queensland Children’s Hospital are eligible for travel and accommodation assistance under the Patient Travel Subsidy Scheme (PTSS).

When you have been notified of your dates for appointments/surgery you can start arranging your travel and accommodation through the travel department of your local hospital. Your local travel department may require a letter from the Queensland Children’s Hospital – your child’s cardiac care coordinator can you help with this.

Important: When booking accommodation and flights, keep in mind that your child will have to wait a minimum of 10 days after their surgery before it is safe for them to fly home. They will require medical flight clearance from their cardiac care team before the flights can be booked.

Oral health clearance

Children with congenital heart disease are more prone to dental disease (such as tooth decay and gum disease), which puts them at risk of bacteria in the mouth entering the bloodstream, travelling to the heart and causing an infection. Read more about congenital heart disease and dental health.

For this reason, your child may need an oral health clearance letter from a dentist stating your child’s mouth is free from infection, deep cavities and rotten teeth before their surgery can safely go ahead.

We recommend booking your child in for a dental check-up as soon as possible after the surgical review appointment, so you have enough time for your child’s dentist to do dental any work necessary without having to delay your child’s surgery. We will provide you with instructions for your dentist on how to complete your child’s oral health clearance letter.

Coming to the Queensland Children’s Hospital

To learn more about the Queensland Children’s Hospital:

• Visit our website – Going to hospital
• watch our My Trip To Hospital videos.

2. Preadmission clinic

A preadmission clinic with a surgical cardiac care coordinator will be booked in the lead up to your child’s surgical admission (usually 1 to 7 days before the surgery). This is an important step in the course of your child’s procedure and recovery.

This appointment takes a number of hours and allows the cardiac team to assess your child’s health status in preparation for their surgery and anaesthetic. Your child’s height and weight will be measured, and a variety of tests may be performed including blood tests, blood pressure, oxygen saturations, X-ray, echocardiogram, and electrocardiogram (ECG).

You may also be asked to provide an oral health clearance letter from your child’s dentist at this appointment (see ‘Oral health clearance’ above).

The preadmission clinic may also cover the following topics to ensure your child is prepared for their surgery:

• Fasting (not eating or drinking) before surgery
• hygiene and bathing before admission
• education about the surgery
• surgical consent
• orientation to the hospital and its facilities
• occupational therapy and or physiotherapy review

This appointment is another opportunity for you and your child to ask any questions you have.

Read more about Cardiac surgery preadmission.

3. Admission and surgery

What to pack for your child’s hospital stay

Babies

• Clothes that zip or button up at the front (this makes it easy to access the wound and dressing after the surgery).
• Onsie suits that have fold back feet (makes it easy for checking/changing device for measuring heart rate and oxygen on feet).
• Socks to keep your baby warm.
• If your baby takes a bottle and is fussy with the teat, we recommend you bring in your own bottles and teats.
• Comforters may be bought in but must be washed beforehand.

Note: Nappies or wipes will be provided in the hospital.

Older children

• Short-sleeved, button-up pyjamas or shirts (easier for negotiating drips, drains and wound care after surgery).
• Comfortable, loose clothing.
• Long sleeved top (for when drips have been removed) as it gets cool on the ward.
• Underwear,  including socks.
• Toiletries – tooth brush, tooth paste, shampoo, soap, hair brush.
• Slippers/slip-on shoes.
• Comfort toys, pillows, blankets may be brought in but must be washed beforehand.
• Entertainment activities – books, games etc.

We recommend parents bring something warm to wear on the ward as some people find the air-conditioning can get cold.

Remember to bring

• Your child’s surgical appointment letter
• Your Medicare card

What to expect on the day

Arrival at the hospital

• When you arrive at the hospital, go to the reception desk for the surgical admissions lounge (4b) on Level 4 and check in with the admissions staff.
• You will then be asked to complete the admission forms.

Before the operation

• After your child’s admission paperwork is done, they will have a series of health checks and pre-surgery assessments, including their heart rate, blood pressure and temperature measured. The admissions staff will help make sure you are in the right place for each assessment. You are welcome to stay by your child’s side while their health checks are being carried out.
• The anaesthetist will meet with you to explain the process, their role in the operation, answer any questions you have and give you a consent form to read and sign. The anaesthetist may also prescribe some medication for your child to take before their operation.
• There will be a wait before your child goes into theatre for their surgery, so we recommend bringing a few things to keep yourself and your child occupied (e.g. books, toys .
• One parent or carer is allowed to go with your child as they are taken into theatre. If you would like to do this we will provide you with a gown to wear.

While your child’s surgery is under way, you can wait in one of the hospital’s parent lounges or anywhere else you feel comfortable. Cardiac surgeries can take several hours so you may prefer to leave the hospital for a while. If you do leave the hospital, please leave a contact phone number so we can contact you if needed.

After the operation

• After the surgery, your child will be transferred to the paediatric intensive care unit (PICU), on Level 4, for close monitoring by specialist nurses and doctors. Your will have tubes and wires attached to them in the PICU to help staff monitor their condition. As they recover, these will be removed.
• Immediate family members are encouraged to visit patients in PICU, however, visitor numbers are limited and parents/carers cannot stay at their child’s beside overnight in the unit.
• When the doctors feel your child is well enough to move out of PICU they will be transferred to the cardiac inpatient ward (Ward10b).
• The average stay after heart surgery is 5-10 days, depending on your child’s progress. If there are any complication, the stay will be longer. Your child will have regular chest X-rays, echocardiograms, and electrocardiograms (ECGs) in the days after the surgery to determine when they are ready to go home.

Important: DO NOT lift your child under the arms — this will pull on the surgical wound. To help them sit up in bed, or get them out of their bed/cot, lift them by placing your arm around their back, and under their thighs.

Pain relief

• All babies and children are given pain medicine via an IV or ‘drip’ for approximately 24 to 48 hours after surgery. This may vary according to your child’s needs.
• Your child’s pain needs will be closely monitored by the hospital’s acute pain service on a  daily basis.
• For children over five years of age, patient-controlled analgesia (PCA drip machine) is available. This is a very safe self-controlled method of pain relief.

Feeding tube

• Sometimes children will have a feeding tube in their nose after surgery. This tube goes all the way to the stomach and is called a nasograstric tube. Having tubes in the nose is not always comfortable but as soon as the child is well enough to eat and drink for themselves the tube is removed.

Drainage tubes

• A child will usually have one or more tubes coming out of their chest after cardiac surgery to drain fluid from the surgical site. A tube called a catheter which goes into the bladder to drain urine into a bag (usually hanging on the side of the bed) will also be needed for a short period after the surgery. Nurses will monitor and chart how much fluid is going into and out of the child’s body.

Physiotherapy after surgery

It’s important for your child to start moving and do some gentle exercises as soon as advised by their care team to help their recovery. Encourage your child to:

• Do arm and leg exercises three to 3-4 times a day
• Do breathing exercises  (10 deep breaths every hour that your child is awake)
• Cough, sit out of bed, change position in bed regularly
• Go for a walk around the ward 3-5 times a day. Your child should increase the distance walked each day and gradually increase the speed.

A physiotherapist will be available to help your child with their exercise plan.

Going home

It is important that you feel comfortable to care for your child at home after they have been discharged from hospital. Your child’s care team will work with you while your child is recovering from their surgery in hospital to plan their discharge and ensure you have the support, information and resources you need. For more information see Going home after cardiac surgery.

Follow-up care

• Your child will have a post-operative review at the Queensland Children’s Hospital about 7 days after their surgery. A doctor or nurse will remove the surgical wound dressing at this appointment. If you live outside of Brisbane, a local paediatrician or your child’s GP may be able to do this for you.
• If your child’s hospital stay is more than 7 days, one of our cardiac surgical care coordinator nurses will contact you approximately 2 weeks after discharge.
• Your child will see their cardiologist 6 to 8 weeks after their surgery.
• All appointment dates will be given to you on discharge or SMS/mailed to you. Your child’s GP will also be sent a discharge summary for their records.

Contact us

Queensland Paediatric Cardiac Service
Queensland Children’s Hospital

For general enquiries
Surgical cardiac care coordinators
Phone: 07 3068 2597

For appointments
Cardiothoracic surgical administration officers
Phone: 07 3068 5775

For surgery date confirmations
Cardiac booking officer
Phone: 07 3068 4306

Developed by Queensland Paediatric Cardiac Service, Queensland Children’s Hospital. We acknowledge the input of consumers and carers.

Resource ID FS259. Reviewed: January 2024

Disclaimer: This information has been produced by healthcare professionals as a guideline only and is intended to support, not replace, discussion with your child’s doctor or healthcare professionals. Information is updated regularly, so please check you are referring to the most recent version. Seek medical advice, as appropriate, for concerns regarding your child’s health.