After Heart Surgery: Caring for Your Child

When it is time for your child to go home after heart surgery, you will be given a discharge summary. A discharge summary tells you about your child's hospital stay and about future follow-up appointments.

This information tells you how to look after your child at home.

Before you leave the hospital, please fill out the following information with the help of your child's nurse:

My child's paediatrician or family doctor is:

My child's cardiologist is:

My child's cardiology clinic nurse is:

My child's surgeon is:

The phone number for the cardiology clinic is:

Follow-up appointments at the cardiology clinic

When your child leaves the hospital, you will be given a time to meet with your child's cardiologist. In the future, you can schedule follow-up appointments with the cardiologist during your child's clinic visits.

One week after your child leaves the hospital, you may have a follow-up appointment in the post-operative clinic. During this visit, your child may:

  • Have his wound checked by the nurse practitioner.
  • Have a chest X-ray, echocardiogram (heart ultrasound), or blood work.
  • See the dietitian or occupational therapist.
  • Ask questions. You and your child will both be able to talk about your concerns.

Please arrive on time for your appointments, and come prepared. Appointments can sometimes be delayed, or you may need to wait for tests to be done. Bring books, toys, snacks, diapers, and anything else you and your child need to be comfortable while you wait. Before an appointment, write down questions you may have and bring them to the clinic.

If you cannot come to an appointment, call the cardiology clinic as early as possible to change it.

Taking care of your child's wounds

After heart surgery, your child will have a wound (incision) in the middle or the side of the chest, as well as other smaller wounds where tubes and wires may have been. Check all these wounds every day for these signs that they may be infected:

  • redness
  • swelling
  • liquid draining from the wound
  • pain

If you see any of these signs, if your child develops a fever, or if you have any concerns, call the cardiology clinic nurse during regular business hours or see your child's paediatrician.

Your child's wounds do not need to be covered with dressings unless they are oozing.

Your child may have stitches. Ask your child's nurse if and when these need to be taken out. Write the information here:

Date my child's stitches should come out:

Person who will take out the stitches:

Special instructions:


Your child's chest tube site

Two days after your child's chest tube(s) is/are taken out, the bandages over the chest tube site(s) should be taken off.

Date I should take off the bandages:

Keeping the wounds clean

Do not soak your child's wounds in water until all of the scabs have fallen off and the area looks healed. Until then, your child should take shallow baths or showers that do not soak the wounds.

Clean the wounds every day with a soft cloth, clean water, and a gentle, pH-balanced baby soap. Afterwards, gently pat dry.

Type of soap we will use at home to clean the wounds:


It may take some time for the scabs to fall off. Do not pick at them to make them fall off sooner. This can cause irritation and infection.

Do not put any creams on the wounds until all the scabs have fallen off and the area looks healed. After the wounds have healed, you can massage mild creams, such as vitamin E, into the scar.


Your child's chest wound should heal fairly quickly. The scar will fade as time passes. Sometimes a scar becomes raised and enlarged. If you are worried about how your child's scar looks, please contact your child's paediatrician or family doctor.

It will take about 1 year for the wound to finish healing completely.

Sun protection

Until all the scabs have fallen off and the area looks healed, cover the wound(s) with clothing that does not let the light through. Put sunscreen on all of your child's exposed skin. After the wound(s) have healed, be especially careful to put sunscreen on the new scar(s).

Managing your child's pain

Your child may have pain for several weeks after surgery. As time passes, the pain will become less severe. When your child leaves the hospital, he will usually have a prescription for pain medicine. As time goes on, your child will need to take this medicine less and less.

If your child's pain gets worse, see your paediatrician or family doctor. Ask your child's nurse how to assess your child's pain.

Your child will need to limit physical activity for several weeks

Children need regular physical activity as part of a healthy lifestyle. However, your child will need to be careful for several weeks after the operation. Please see the tables for more information.

Instructions for babies

Time period Activity recommendations

Up to 2 weeks after surgery, or until the chest wound is fully healed

Avoid activities that might disturb the wound.

Avoid lying on tummy. However, after this time, lying on tummy is encouraged for normal development.

Up to 6 weeks after surgery

Protect the chest muscles and bone during all activity.

Encourage lying on tummy. This promotes normal development.

Lift under head/neck and bottom.

Avoid lifting under arms.

Avoid pulling arms when moving to sitting position or while dressing.

Instructions for toddlers, children, and teens

Time period Activity recommendations

Up to 2 weeks after surgery, or until the chest wound is fully healed

Avoid activities that might disturb the wound.

Avoid lying on tummy.

Up to 6 weeks after surgery

Protect the chest muscles and bone during all activity.

Lift toddlers under head/neck and bottom.

Avoid lifting under arms.

Avoid pushing or pulling heavy objects.

Avoid doing push-ups, sit-ups, or pulling self up on furniture.

Avoid backward arm circle movements such as swimming.

Up to 12 weeks after surgery

Protect the chest bone during all activity.

Go back to all normal activities except for those which could cause a blow to the chest. These include rough play, ball throwing, football, hockey, karate, bean bag fights, Red Rover.

Are there any activities that your child participates in that you would like to ask a health care team member about? If so, write them here:


Your child's behaviour

After surgery, you may notice a change in your child's behaviour. The following changes are normal after a hospital stay:

  • disturbed sleep patterns
  • wetting the bed
  • being more fussy or clingy

These problems usually go away after 1 or 2 weeks. During this stressful time, you need to support your child but also set appropriate limits.

Going back to school or day care

Your child can go back to school 2 weeks after surgery, or when he feels physically well enough to go.

Babies and toddlers can go back to day care after 2 weeks.

If there are infections at the day care or school, your child should not go back until 4 weeks after the surgery. Good hand washing and avoiding contact with others who are ill can stop the spread of infection.

Routine health care

Your child should see his paediatrician or family doctor within 1 or 2 weeks after your child leaves the hospital. This doctor will follow your child's ongoing general health needs. If you have any concerns about your child's health, speak to this doctor.

Write the date and time of your child's first appointment here:


If you have questions about your child's immunizations, please contact your child's paediatrician or family doctor. Consult the Canadian Immunization Guide for more detailed information.

It is available at:

There are special considerations for some children who have had heart surgery. These may affect the timing and type of immunizations. These include:

  • If your child was given blood products for the heart surgery. Ask your nurse for this information before your child goes home.

    My child received this blood product:

    on this date:
  • If your child has a weakened immune system for reasons such as 22q11 deletion syndrome, also known as DiGeorge syndrome.


If you wish to have your child circumcised, you should wait at least 8 weeks after surgery. If your child is taking blood thinners (anticoagulation therapy), please talk to your child's cardiologist and thrombosis team members before you go ahead.

Dental care, surgery, and other procedures

Talk to your child's cardiologist before your child has any dental treatment, surgery, or other procedures. Ask your child's cardiologist if your child needs to take special precautions before these procedures. Before your child has any procedures, make sure your child's health care practitioners know that your child has had heart surgery.


If you and your child live out of town, you may need to stay close to the hospital until you have had your post-operative clinic visit. Once the cardiologist is happy with your child's condition, you can go home.

If your child has ongoing health concerns, this may limit your travel or vacation plans. If you are not sure what your child can do, contact your child's cardiologist.

Car seat

When travelling in a car, you must make sure that your children are safely seated in a car seat or secured with a seat belt at all times. This is the law. Please remember to bring your child's car seat whenever you are travelling to or from the hospital by car. If you do not have a car seat, the hospital can lend you one.

Learning first aid

First aid and CPR (cardiopulmonary resuscitation, also called Basic Life Support or BLS) courses are recommended for all parents. These skills could let you save your child's life or someone else's. Ask your child's nurse how you can access these courses.

Feeding your child

The discharge summary that you get when you leave the hospital will tell you these things:

  • the type of feed your child is taking
  • the smallest amount of feed your child needs in a day in order to grow and prevent dehydration

All children should eat a well balanced diet of fruit, vegetables, and protein for healthy growth and development.

After your child has had heart surgery, he may have trouble eating enough to gain weight. Children with heart problems use more energy and need more calories.

Feeding babies

Extra calories are often added to breast milk or formula. If your child needs extra calories, the dietitian will give you a recipe.

Babies with feeding problems and slow weight gain are followed closely by the dietitians in clinic appointments. If your child has slow weight gain, you may be given intake forms before you leave the hospital. You can use these forms to write down how much your child is eating. Your child's dietitian may also ask you to keep track of your child's fluid output, that is, how much he urinates (pees), vomits (throws up), or defecates (poos). Please bring these forms with you to your child's clinic appointments. The dietitian will use them to plan your child's feeding.

When feeding your baby, try to limit the feeding time to 30 minutes so that your baby does not become tired. Some babies have problems swallowing formula. If your baby is having feeding difficulties, the occupational therapist or dietitian may get involved in your baby's care.

Some babies will need tube feeding to add to what they eat normally. If your child needs a feeding tube, the nursing staff will show you how to use and care for the tube at home.

Making sure your child does not get dehydrated

It is important to watch for signs and symptoms of dehydration. Dehydration happens when the body does not have enough water to work properly. Signs of dehydration include:

  • fewer wet diapers
  • dry mouth
  • sunken fontanelle, the soft spot on a baby's head

To prevent dehydration, try to reach at least the smallest amount of fluid in your child's discharge summary. Fluid means breast milk, formula, or other liquids.

If your child is refusing to drink, see your paediatrician. Remember to give your child extra drinks on hot days or when he is sweating from exercise.


If your child needs medicine at home, you will be given a prescription before you leave the hospital. Try to have the prescription filled at the hospital pharmacy before you go home. Your local pharmacy may not have some of the special medicines your child needs. The nurse or pharmacist will let you know what the medicine is for and how to give it.

When and how to give medicines:

  • Give the medicine at the same time every day. If your child is taking several medicines, you can ask your nurse or pharmacist to give you a chart to help you remember when to give the medicine.
  • You should always try to give medicine before your child eats. Babies are more likely to take their medicine when they are hungry, and they are less likely to throw up if they get their medicine before their stomachs are full.
  • Try not to add medicine to food or drinks. When medicine is mixed with food or drink, it can be hard to know if the full dose has been taken. If you must add medicine to food or drink, put the medicine in a very small amount of food or drink so that the child will finish it all.
  • Clean the oral syringes, spoons, or medicine cups with hot soapy water after each use.
  • Do not mix different syringes with different medicines. Each medicine must have its own syringe.

Read all the information about your child's medicine:

  • Read the written information about your child's medicine before you leave the hospital. The pharmacist, nurse, or doctor can answer any questions you may have.
  • Always read the labels on the medicine that you get from the pharmacy. Make sure that you know when to give it and how much to give.
  • Some of the medicine that your child takes may need to be refrigerated. Be sure to check the labels and store them correctly.

If you miss a dose or your child throws up:

  • If your child throws up or spits up all of the medicine right away, give your child another dose.
  • If your child throws up 15 to 20 minutes after you have given the medicine, do NOT give your child another dose. If you are not sure what to do, call your doctor or pharmacist.
  • If you miss a dose, do not double up on the next dose. If you are less than 1 hour late, go ahead and give the medicine. If you are more than 1 hour late, give the next regular dose at the regularly scheduled time. If you are not sure what to do, call your doctor or pharmacist.

Other things to remember:

  • Check with your doctor or pharmacist before you give any over-the-counter medicines.
  • Bring all of your child's medicines with you to each visit to the hospital.

Keep all medicine locked away and out of the reach of children at all times.

When to get help from a doctor or nurse


If you have an urgent concern about your child, call 911/Emergency Services. Some examples of urgent concerns are:

  • trouble breathing
  • seizures
  • fainting
  • not waking up

Ordinary health concerns

If you have any questions or concerns about your child's health that you think are NOT related to your child's heart problem, please contact your child's paediatrician or family doctor. Some examples include:

  • cold symptoms, such as runny nose and cough
  • rashes
  • questions about immunizations
  • injuries from ordinary activities

Concerns that are related to your child's heart problem

If you have any questions or concerns within the first 6 weeks after your child leaves hospital, and you think they are related to your child's heart problem:

  • Contact your cardiac clinic nurse during regular business hours.
  • After regular business hours, call the cardiology inpatient unit nurses or the cardiology fellow (doctor) on call.

Some examples of these concerns include:

  • Changes in feeding, such as decreased fluid intake; loss of appetite; weight loss; tiredness and sleeping during feeds; not waking for feeds; shortness of breath while feeding; vomiting or diarrhea; increased sweating during feeding
  • Changes in breathing, such as breathing very quickly, especially when asleep; noisy breathing or making a grunting sound; increased sweating; ongoing cough
  • Changes in behaviour, such as extreme sleepiness or irritability
  • Changes in colour, such as paleness; mottling of the skin (skin looks like marble); blueness of the lips and tongue or nail beds (cyanosis); rash on hands, feet, or body
  • Signs of wound infection, such as fever, redness, puffiness, increasing tenderness, or drainage from the wound
  • Signs of water retention, such as swelling or puffiness of the eyelids, face, hands, or feet; swollen genitals in boys; swollen legs or ankles in older children; less urine or fewer wet diapers

Congenital heart disease information

Judith Wilson, RN, BScN, MN
Jennifer Russell, MD, FRCPC
Carrie Morgan, RN, BScN, MN
Jennifer Kilburn, BScN, MN


At SickKids:

AboutKidsHealth Family Resource Centre: 416-813-5819
Call this number to borrow a car seat.