Caring for your child at home after cardiac surgery

It is important to follow these observation and care guidelines while your child is recovering at home after a cardiac surgery.

Wound and dressing care

Keep the surgical wound dry and clean after surgery is important to help prevent infection.

When bathing, a shallow bath or sponge bath is recommended until the surgical wound dressing comes off. If your child prefers to shower, the nurses will show you the correct way to shower without getting the wound too wet.

A water-repellent dressing on your child’s surgical wound will help keep out water and germs. It is not waterproof, so do not allow the dressing to be soaked with water. If it does accidentally get wet, dry it as soon as possible.

If your child is dribbly or a messy eater, putting a bib on your child and changing it regularly is helpful to prevent the wound getting dirty.

Do not touch allow anyone to touch your child’s dressing or scar – including your child. To discourage younger children from touching their wound, try dressing them in clothing which covers it and makes access difficult.

If the edges of the dressing start to peel back from the skin/no longer stick, check that the wound is still covered.  If the wound is exposed, contact your surgical care co-ordinator for advice (a dressing change may be  required).  

If you notice anything else that looks different about your child’s wound, contact the cardiac surgical care team for advice and send them a photo via email.

When to seek help

Contact the cardiac surgical care team (or contact Ward 10b through switch if after business hours) and go to your closest emergency department if you notice any of the following:

• A temperature greater than 37.5° C (in the first month after surgery)
• wound redness, swelling, ooze, excessive soreness, gaping wound edges
• signs of congestive cardiac failure (see below ).

If it’s not an emergency but you have any concerns, contact 13 Health (13 43 25 84). Qualified staff will give you advice on who to talk to and how quickly you should do it. You can phone 24 hours a day, seven days a week.

Congestive heart failure

Congestive heart failure occurs when the heart muscle becomes too weak to pump enough blood through the body for normal function and activity. It does not mean the heart will stop working.

If you notice any of the following signs and symptoms of congestive heart failure, contact your child’s doctor as soon as possible:

• excessive tiredness
• laboured or fast breathing (increase in usual breathing rate and effort)
• fluid accumulation (oedema)
• skin colour looks very pale or is turning blue
• poor feeding
• decrease in urine output.

Pain relief

When you go home continue to give your child paracetamol (Panadol) as needed, following the instructions on the bottle. After the first couple of days at home you will notice that your child is more comfortable, and you can reduce the number of paracetamol doses. Speak to your doctor if your child is still in pain.

Medications

Continue to give your child any discharge medications they have been prescribed. When giving your child medication, especially new drugs, follow the steps below:

1. Check you have the correct bottle/packet (read the label)
2. Give the correct dose
3. Check the label to double check that you have the correct label, dose, and time.

Check all discharge medications with your nurse before you go home. The nursing staff will teach you how to give the medications. Our pharmacy staff will also give you instructions for your child’s discharge medication. If you do not understand anything, ask them to show you again.

Returning to physical activities

Children under 3 years will usually self-regulate their activity levels, and as they feel better, they will do more.

If your child is over three years old, a physiotherapist will talk to both you and your child after the operation about exercises to be performed in the hospital and at home. The aim of these exercises is to ease and prevent back, neck and shoulder pain and stiffness, to improve lung expansion and keep lungs clear of secretions.

Sternum wounds take approximately 8-12 weeks for the bone to heal and for the sternum to be fully stable therefore it is important during this time to avoid jarring activities, twisting movements, excessively fast movements or using a single arm to strain, push or pull.

School sports and other activities that may jar the chest, for example skate boarding, diving, and trampolining are to be avoided until the sternum is fully healed, which will usually take 12 weeks. Discuss contact sport with your child’s doctor prior to recommencing.

(For other activities not mentioned above please contact the cardiac surgical care team for advice)

Lifting

Carrying light objects may commence 4 weeks after the operation if the wound is healing normally. Restrict lifting of heavy weights for 8‐12 weeks. School bags will need to be closely monitored for weight during this period. Refer to the table below.

Returning to school/daycare

Most children can return to school or childcare within 3-4 weeks after surgery. Some parents find a staggered return is best initially i.e., doing half days or every second day to help your child readjust and prevent fatigue. You may need to provide the school with a copy of this fact sheet for your child to be excluded from physical education until 8-12 weeks after surgery as per the returning to sports guidelines above.

Infective endocarditis

Infective endocarditis is a serious medical problem which requires hospitalisation and an extensive course of antibiotic treatment. In the first 6 months after heart surgery your child is at a significant increased risk of developing infective endocarditis. To prevent this your child may require antibiotic prophylaxis for certain procedures.

Long-term scar management

Scars are a normal process after surgery and occur as part of healing. New scars can be raised, red, thick, and more sensitive/itchy than the surrounding skin.  Most scars will fade and become softer, thinner, and more movable over time.  Once your child’s wound is healed, it is important to moisturise regularly and be diligent with sun protection.

If you or your child are concerned about how your child’s scar is looking, feeling, or moving, or if it is impacting on their participation in normal daily activities, ask their care team about a referral for a review by an occupational therapist.

Child development after cardiac surgery

Children under 12 months who have open-heart surgery for congenital heart disease are at higher risk for developmental problems.  During your hospital stay, your treating allied health clinicians have assisted you in supporting your baby’s development.  If your infant is under 12 months, you will also be provided education about and resources for the Congenital Heart Disease Long-term Improvement in Functional Health (CHD Life) Program. This long-term care pathway helps infants and families access local services to support development.

When your child is discharged from the hospital, they will be referred to your local community child health service, and other services to support their development as needed. If you have any questions about the pathway, contact the CHD LIFE Program on 3068 1784.

Oral health

Research has shown that a high percentage of children who have had heart surgery have underdeveloped tooth enamel, if oral hygiene is not adequate. This means the risk of tooth decay is higher. To maintain good dental health and prevent decay, feed your child a balanced diet, brush their teeth twice a day, and have dental check-ups every  6 months.  Learn more about congenital heart disease and dental health.

Immunisations

Continue your child’s immunisations after their surgery as per the National Immunisation Program Schedule. However, the following guidelines must be followed by your GP or Health Centre:

1. Non-live vaccines need to wait for 2 weeks after surgery.
2. Live vaccines need to wait 2 weeks after surgery, where no blood products are used.
3. If blood products were given, live vaccines should be delayed by 3 months except for rotavirus vaccines. The interval between rotavirus vaccination and receipt of the blood product should be as long as possible, but within the suggested age limits for dosing.

Discuss with your cardiologist about additional immunisations that are sometimes recommended for cardiac children.

For all children where vaccines need to be deferred, an immunisation medical exemption form can be submitted for temporary exemption to ensure families are not financially disadvantaged. The doctors on the ward or your cardiologist can help you with this.

Queensland Children’s Hospital offers a drop-in Immunisation service on Level 2 (2G) where all patients can present for their National Immunisation Program Schedule vaccinations without prescription or appointment.

Contact us

Queensland Paediatric Cardiac Service
Queensland Children’s Hospital
501 Stanley Street, South Brisbane
Phone: 07 3068 2790
Phone: 07 3068 1111 (general enquiries/switch)

If it’s not an emergency but you have any concerns, contact 13 Health (13 43 25 84). Qualified staff will give you advice on who to talk to and how quickly you should do it. You can phone 24 hours a day, seven days a week.

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

Resource ID: FS089. 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.