Congenital Heart Disease (CHD) Treatment in Children

Introduction

Learning that your child has a congenital heart defect — or hearing the words “congenital heart disease” for the first time — is one of the most difficult moments a parent can face. Whether the diagnosis was made during pregnancy, in the first hours after birth, or later in childhood when symptoms appeared, the questions that follow are often the same: What does this mean for my child? What needs to be done? Will my child be able to live a normal life?

This guide is written for parents and families whose child has been diagnosed with congenital heart disease (CHD), or is being evaluated for it. It explains what CHD is, the main types of defects, how diagnosis is made, the range of treatments available today, what recovery looks like after surgery or catheter procedures, and what long-term follow-up involves. The aim is not to replace the conversations you will have with your child’s cardiologist and surgeon, but to help you walk into those conversations with a clearer understanding of what is being discussed.

The reassuring background to all of this is that pediatric cardiac care has changed dramatically over the past few decades. Many defects that were once life-limiting are now repaired in early childhood, and most children with CHD today grow into adolescence and adulthood. Care has become longer-term and more individualised, which means a treatment plan is rarely a single event — it is a relationship with a cardiac team that often continues for years.

What Is Congenital Heart Disease?

Congenital heart disease, or CHD, is the umbrella term for structural problems of the heart or the large blood vessels around it that are present from birth. “Congenital” simply means present at birth. The defects form in the first weeks of pregnancy, when the heart is developing, and they range from very small holes that may never need treatment to complex problems that require surgery in the first days of life.

To understand what can go wrong, it helps to picture the healthy heart. The heart has four chambers — two upper chambers called atria and two lower chambers called ventricles. The right side receives blood that has returned from the body and pumps it to the lungs to pick up oxygen. The left side receives the oxygen-rich blood from the lungs and pumps it out to the body. Valves between the chambers and at the exit points keep blood flowing in the right direction. Large arteries — the aorta and the pulmonary artery — carry blood away from the heart.

In CHD, one or more parts of this system did not form in the usual way. There may be a hole between chambers, a valve that is too narrow or leaky, a vessel that is in the wrong position, a chamber that did not develop fully, or a combination of several of these. The result is that blood does not flow through the heart and lungs in the way it should, which can affect oxygen levels, growth, and how hard the heart has to work.

CHD is the most common type of birth defect worldwide. Most cases are mild to moderate and very treatable. A smaller number are described as “critical” CHD, meaning the defect needs intervention within the first weeks or months of life.

Types of Congenital Heart Disease

There are dozens of specific congenital heart defects, but doctors often group them into broad categories based on what the defect does to blood flow and oxygen levels. The two most common groupings are acyanotic defects, where oxygen levels in the blood stay near normal, and cyanotic defects, where the defect causes lower-than-normal oxygen levels and may give the skin and lips a bluish tinge (cyanosis).

Acyanotic defects

These are usually defects that allow extra blood to flow to the lungs, or that obstruct blood flow without causing low oxygen.

• Atrial septal defect (ASD): a hole in the wall between the two upper chambers. Small ASDs may close on their own; larger ones can be closed with a catheter device or surgery.
• Ventricular septal defect (VSD): a hole in the wall between the two lower chambers. VSDs are among the most common CHDs. Small VSDs often close on their own during early childhood. Larger VSDs may need surgical or catheter closure.
• Patent ductus arteriosus (PDA): a small vessel that normally closes shortly after birth remains open, allowing abnormal blood flow between the aorta and pulmonary artery. PDAs may be treated with medication in premature babies, with catheter closure, or with surgery.
• Coarctation of the aorta: a narrowing of the main artery that carries blood from the heart to the body. It is treated by widening the narrowed section, either through surgery or with a catheter procedure (balloon angioplasty, sometimes with a stent).
• Atrioventricular septal defect (AV canal defect): a combination of defects in the centre of the heart, affecting the walls between chambers and the valves between them. It is more common in children with Down syndrome.
• Pulmonary or aortic valve stenosis: narrowing of one of the valves that controls blood leaving the heart. It is often treated with balloon valvuloplasty through a catheter, or with surgical repair or valve replacement when needed.

Cyanotic defects

In these defects, less oxygen-rich blood reaches the body, so the baby or child may look bluish, especially around the lips, fingers, and toes.

• Tetralogy of Fallot (TOF): a combination of four problems — a VSD, narrowing of the pulmonary valve, an aorta that sits over both ventricles, and a thickened right ventricle. It is typically repaired with open-heart surgery in the first year of life.
• Transposition of the great arteries (TGA): the two main arteries leaving the heart are switched, so oxygen-poor blood is sent back to the body instead of to the lungs. It needs urgent treatment, usually with an “arterial switch” operation in the first weeks of life.
• Tricuspid atresia: the valve between the right atrium and right ventricle did not form, so blood cannot flow through that side of the heart in the normal way. It is managed with a series of staged operations.
• Total anomalous pulmonary venous connection (TAPVC): the veins that should bring oxygen-rich blood from the lungs to the left atrium are instead connected to the wrong place. It requires surgical correction, often urgently.
• Hypoplastic left heart syndrome (HLHS): the left side of the heart is severely underdeveloped. It is managed through a sequence of three operations during the first years of life, or in some cases with heart transplantation.
• Truncus arteriosus, pulmonary atresia, double-outlet right ventricle, Ebstein’s anomaly and other less common defects, each with its own management pathway.

The specific defect your child has — and whether it occurs alone or in combination with others — will shape every part of the treatment plan, from the timing of any intervention to the type of follow-up needed afterwards.

Causes and Risk Factors

One of the questions parents most often ask is, “Did I do something to cause this?” In the vast majority of cases, the answer is no. The heart begins forming in the first weeks of pregnancy, often before a woman even knows she is pregnant, and most heart defects arise without any identifiable cause.

That said, doctors have identified several factors that can increase the chance of a CHD:

• Genetic conditions: CHD is more common in children with certain chromosomal conditions such as Down syndrome, Turner syndrome, DiGeorge syndrome (22q11 deletion), and Williams syndrome. Some heart defects also run in families even without a named syndrome.
• Family history: if a parent or sibling has a CHD, the chance of a child having one is somewhat higher than in the general population.
• Maternal health during pregnancy: poorly controlled diabetes, certain infections during early pregnancy (such as rubella), and some medications can raise the risk.
• Exposures during pregnancy: alcohol, smoking, and certain medications taken during the first trimester have been associated with higher CHD rates.

Even when one of these factors is present, most pregnancies still result in a baby with a structurally normal heart. And in most children with CHD, no specific cause is ever found. Understanding this can help families set aside guilt that is rarely justified.

How CHD Is Diagnosed

CHD can be diagnosed at very different points — sometimes before birth, sometimes in the newborn period, and sometimes later in childhood when symptoms appear or a murmur is heard during a routine check-up.

Diagnosis before birth

A detailed prenatal ultrasound between roughly 18 and 22 weeks of pregnancy can identify many heart defects. If something looks unusual, a fetal echocardiogram — a specialised ultrasound of the baby’s heart — is often performed by a pediatric cardiologist. A prenatal diagnosis allows the family and the medical team to plan the birth at a hospital with pediatric cardiac care, and to prepare for any treatment the baby may need shortly after delivery.

Diagnosis at birth and in early infancy

Many hospitals perform pulse oximetry screening in newborns, a simple test that measures oxygen levels and can detect critical CHDs that were missed prenatally. The American Academy of Pediatrics and other major societies have supported this screening as part of routine newborn care. Other signs that prompt investigation include a heart murmur, fast or laboured breathing, poor feeding, sweating during feeds, poor weight gain, or a bluish colour of the lips and skin.

Diagnosis in older children

Some defects, particularly small ASDs or mild valve problems, do not cause symptoms in infancy and are picked up later — sometimes during a routine school check, sometimes when a child seems unable to keep up with peers in physical activity, or when a heart murmur is heard.

Tests used to confirm the diagnosis

• Echocardiogram: the most important test in pediatric cardiology, an ultrasound that shows the heart’s structure and how blood is flowing.
• Electrocardiogram (ECG): records the electrical activity of the heart.
• Chest X-ray: shows the size and shape of the heart and the lungs.
• Pulse oximetry: measures oxygen levels in the blood.
• Cardiac MRI or CT: used in selected cases when detailed three-dimensional imaging of the heart or great vessels is needed.
• Cardiac catheterisation: a thin tube is passed through a blood vessel into the heart, allowing precise measurements of pressures and oxygen levels, and sometimes treatment in the same procedure.
• Genetic testing: offered in selected situations, especially when a syndrome is suspected or when the defect pattern suggests an underlying genetic cause.

Signs Parents May Notice

If your child has already been diagnosed, this section is less about recognising CHD for the first time and more about understanding what the signs your doctor has been watching for actually mean, and what changes should prompt you to call the cardiac team.

In infants, signs of a significant heart defect may include rapid or laboured breathing, difficulty feeding (especially needing frequent rests or sweating during feeds), poor weight gain, a bluish colour of the lips, tongue or skin, or unusual tiredness. In older children, parents may notice breathlessness on exertion, chest pain, palpitations (a feeling that the heart is racing or skipping), fainting, or swelling of the legs or abdomen. After a procedure or surgery, new or worsening versions of any of these symptoms should be discussed with the cardiac team promptly.

Treatment and Management

Treatment for CHD is highly individualised. Some defects need no treatment at all, only periodic monitoring. Others need medication, a catheter procedure, or surgery. Some complex defects need a sequence of operations spread across several years. The pediatric cardiologist and cardiac surgeon will choose the approach based on the specific defect, your child’s age and size, oxygen levels, growth, and any other medical conditions.

Watchful monitoring

Many small defects, particularly small ASDs, small VSDs, and mild valve problems, do not need any active treatment. They are followed with periodic echocardiograms and clinic visits to make sure the heart is growing and functioning normally. Some defects close on their own as the child grows.

Medications

Medicines do not repair a structural defect, but they can help the heart work better and reduce symptoms while the child is waiting for a procedure or after one has been performed. Commonly used medicines include:

• Diuretics (such as furosemide) to remove excess fluid when the heart is overloaded.
• ACE inhibitors to reduce the work the heart has to do.
• Beta blockers to slow the heart rate or treat rhythm problems.
• Digoxin in selected cases to support heart function.
• Prostaglandin E1 given in newborns with certain critical defects to keep the ductus arteriosus open until surgery can be performed.
• Antiarrhythmic medicines for abnormal heart rhythms.

Catheter-based procedures

Many defects that once required open-heart surgery can now be treated through cardiac catheterisation, in which thin tubes are guided through a blood vessel (usually in the groin) into the heart. These procedures avoid a chest incision and often allow children to go home within a day or two. Common catheter-based treatments include:

• Device closure of ASDs, certain VSDs, and PDAs using small umbrella- or plug-shaped devices.
• Balloon valvuloplasty to widen narrowed pulmonary or aortic valves.
• Balloon angioplasty and stenting for coarctation of the aorta or narrowed branch pulmonary arteries.
• Balloon atrial septostomy, an urgent procedure performed in newborns with certain defects to improve mixing of blood until surgery.

Open-heart surgery

For many moderate and complex defects, open-heart surgery is the definitive treatment. The surgeon opens the chest, the child is placed on a heart-lung bypass machine that takes over the work of the heart and lungs, and the defect is repaired directly. Depending on the defect, the surgeon may close a hole with a patch, repair or replace a valve, reconnect blood vessels, or reconstruct a chamber.

Common surgical operations include:

• VSD or ASD patch closure.
• Repair of Tetralogy of Fallot.
• Arterial switch operation for transposition of the great arteries.
• Repair of AV canal defects.
• Repair of TAPVC.
• Coarctation repair through a side incision in the chest.
• Valve repair or replacement.

Staged surgery for single-ventricle defects

Some of the most complex CHDs — including hypoplastic left heart syndrome and tricuspid atresia — involve a heart with only one functional pumping chamber. These are managed through a series of three operations over the first few years of life, often called the Norwood procedure in the newborn period, the Glenn procedure around 4–6 months, and the Fontan procedure usually between 2 and 4 years of age. The goal is to route blood from the body directly to the lungs without needing the missing chamber. Children who complete this pathway need careful long-term follow-up.

Hybrid procedures

In some cases, surgeons and interventional cardiologists work together in the same procedure, combining a small surgical opening with catheter techniques. This approach is used in selected complex defects.

Heart transplantation

For a small number of children with very complex defects, severe heart failure, or unsuccessful prior repairs, heart transplantation may be considered. It is a complex path with its own long-term considerations, and the decision is made by a specialist transplant team.

Preparing for a Procedure or Surgery

If your child is scheduled for a cardiac procedure, the team will guide you through preparation in detail. Some general elements are common to most cases:

• Pre-admission tests: blood tests, an updated echocardiogram, an ECG, and sometimes a chest X-ray or cardiac MRI.
• Anaesthesia review: a pediatric anaesthetist will meet you and your child to plan anaesthesia and answer questions.
• Fasting instructions: your child will need to stop eating and drinking for a defined period before the procedure. The exact timing depends on age and the type of procedure.
• Medication review: some medicines may need to be stopped or adjusted before surgery.
• Vaccinations and infections: the team will ask about recent illnesses; procedures are usually postponed if a child has an active infection.
• Talking to your child: for older children, an honest, age-appropriate explanation — with the help of a child-life specialist or nurse where available — helps reduce fear.

Parents often find it helpful to ask the team three things in advance: what will happen on the day of admission, who will be the main point of contact during the hospital stay, and what the expected recovery timeline looks like for this specific procedure.

What Happens During Treatment

The exact experience depends on the type of procedure, but the general flow is similar.

For a catheter-based procedure

Your child is given general anaesthesia or deep sedation. The interventional cardiologist inserts thin tubes into a blood vessel, usually in the groin, and guides them up to the heart using X-ray imaging. The defect is closed, a valve is widened, or a stent is placed as planned. The catheters are removed and pressure is applied to the entry point to stop bleeding. The procedure typically lasts one to a few hours. Most children are watched in a recovery area and then on a ward, and many go home the next day.

For open-heart surgery

After general anaesthesia, the surgeon makes an incision in the front of the chest. For most procedures, the breastbone is divided and the heart is placed on a heart-lung bypass machine that temporarily takes over circulating and oxygenating the blood. The defect is repaired, the heart is restarted, and the breastbone is wired back together. The skin is closed with sutures. The operation may take several hours.

After surgery, your child will spend time in a pediatric cardiac intensive care unit (PCICU), where breathing support, monitoring lines, and a chest drain are common. As the child stabilises, support is gradually reduced and the child is moved to a step-down ward and then to a regular ward before going home.

Recovery and Aftercare

Recovery is shaped by the type of intervention, the complexity of the defect, the child’s age, and any other conditions present. The general patterns below help parents know what to expect.

After a catheter procedure

Most children recover quickly. The hospital stay is often just one night. There may be some soreness or bruising at the groin site, but no chest incision to heal. Doctors usually recommend rest and avoidance of vigorous activity for several days, after which most children can return to school and routine play. The cardiologist will arrange follow-up echocardiograms to confirm that any device or balloon treatment is working as planned.

After open-heart surgery

The hospital stay typically ranges from about one to two weeks for routine repairs and longer for complex procedures. The early days involve close monitoring, pain control, gradual removal of tubes and lines, and a slow return to feeding and movement. Once home, recovery continues over several weeks:

• Wound care: the chest incision is kept clean and dry. Parents are taught how to recognise signs of infection such as redness, swelling, or discharge.
• Pain control: mild pain medications are usually enough after discharge.
• Activity: infants generally return to their usual routines as their energy improves. Older children are asked to avoid contact sports, climbing, and heavy lifting for around six weeks while the breastbone heals.
• Feeding and growth: some children, especially infants who had heart failure before surgery, need extra calories. A dietitian may help with feeding plans.
• School: most children return to school within a few weeks, sometimes with temporary restrictions on physical activity.
• Emotional recovery: children may be more clingy, anxious, or have disturbed sleep for a while after a hospital stay. This usually settles with time and reassurance.

Long-term follow-up

Almost all children with CHD — even those whose defects have been fully repaired — need lifelong follow-up with a cardiologist. The frequency depends on the defect and the type of repair. Follow-up visits typically include a clinical examination, an ECG, an echocardiogram, and sometimes exercise testing or rhythm monitoring. The aim is to detect issues such as new leaking of a valve, abnormal rhythms, or changes in heart function early, when they are easier to manage.

Risks and Complications

Pediatric cardiac care has improved dramatically, but every treatment carries some risk. Being informed helps parents make decisions and recognise problems early.

Short-term risks of procedures and surgery

• Bleeding or the need for a blood transfusion.
• Infection of the wound, lungs, or bloodstream.
• Abnormal heart rhythms that may need medication or, rarely, a pacemaker.
• Reactions to anaesthesia.
• Fluid around the heart or lungs.
• Residual defects — for example, a small leak around a patch — that may need further treatment.
• In complex operations, risks to the brain, kidneys, or other organs related to time on bypass.

Longer-term considerations

• Arrhythmias: abnormal heart rhythms can develop years after a repair, especially in defects involving the upper chambers or after extensive surgery.
• Valve problems: a repaired valve may become leaky or narrowed over time and may need re-intervention.
• Heart failure: in complex defects, the heart muscle may weaken over years.
• Need for re-operation or repeat catheter procedures: some children, particularly those with complex defects or with prosthetic valves or conduits, will need further procedures as they grow.
• Endocarditis: infection of the inner lining of the heart. Children with certain CHDs are at higher risk, and dental care and good oral hygiene are important. Your cardiologist will advise whether antibiotics are needed before dental work.
• Neurodevelopmental considerations: children who undergo complex cardiac surgery in infancy may have a higher chance of developmental or learning differences. Early developmental assessment and support are often recommended.

Living with CHD: Daily Life, School, and Activity

One of the most important goals of modern CHD care is to allow children to live as fully and normally as possible. The specifics vary by defect, but several themes apply broadly.

Physical activity

Most children with repaired CHD can take part in physical activity, and exercise is good for the heart. The cardiologist will give guidance about which activities are suitable, and whether any specific sports should be avoided. Children with certain complex defects, single-ventricle physiology, or significant rhythm problems may be advised to avoid intense competitive sports, but light to moderate activity is almost always encouraged.

School and learning

Most children with CHD attend mainstream school. Some, especially those who had complex surgery in infancy or who have an associated genetic syndrome, may benefit from extra support with learning, attention, or motor skills. Sharing the diagnosis with the school and any specific restrictions or precautions helps teachers respond appropriately if your child becomes tired or unwell.

Vaccinations and infections

Children with CHD generally benefit from staying up to date with routine vaccinations, including annual influenza vaccination. The cardiology and pediatric team will advise about any additional vaccines, such as protection against respiratory syncytial virus (RSV) for infants with certain defects.

Dental care

Good oral hygiene helps reduce the risk of endocarditis. Children with certain CHDs are advised to have antibiotic cover before some dental procedures — your cardiologist will tell you whether this applies to your child.

Travel

Most children with CHD can travel, including by air, once they have recovered from any recent procedure. For complex cases, it is worth discussing travel plans with the cardiologist, especially for flights or destinations at high altitude.

Emotional and family wellbeing

Caring for a child with CHD is demanding. Parents commonly experience anxiety, sleep difficulties, and feelings of guilt or helplessness, especially around hospital admissions. Siblings may also feel the strain. Speaking openly within the family, connecting with other parents who have been through similar experiences, and accessing psychological support when needed are all part of good care for the whole family, not just the child.

Monitoring and Follow-up Through Childhood and Beyond

CHD is now understood as a lifelong condition. Even children whose defects have been successfully repaired need ongoing review, and the team and the kind of monitoring evolves over time.

Through childhood

Follow-up visits are most frequent in the first year after a procedure and gradually become less frequent as the child grows and the heart stabilises. Visits typically include weight and growth checks, examination, and echocardiograms. The cardiologist may also assess feeding, development, and exercise tolerance.

Adolescence and the transition to adult care

As children with CHD move into their teenage years, the focus of care expands. Young people are encouraged to understand their own diagnosis, the names of their medications, what previous operations they have had, and what activity guidance applies to them. Around late adolescence, care typically transitions from a pediatric cardiologist to a specialist in adult congenital heart disease (ACHD). Major societies, including the American Heart Association and the European Society of Cardiology, emphasise that this transition should be planned rather than abrupt, ideally over several visits.

Pregnancy and family planning

Many women with repaired CHD can have safe pregnancies, but pregnancy puts extra strain on the heart and the level of risk depends on the specific defect and repair. Pre-pregnancy counselling with an ACHD specialist is recommended for women with CHD. The risk that a child will also have CHD is somewhat higher when a parent has a CHD, and fetal echocardiography during pregnancy is often offered.

When to Seek Urgent Medical Attention

After your child has been diagnosed or treated, certain symptoms should prompt you to contact the cardiology team or seek urgent medical care. These include:

• Sudden difficulty breathing or rapid, laboured breathing that does not settle.
• New or worsening bluish colour of the lips, tongue, or skin.
• Fainting or near-fainting episodes.
• A new pattern of fast, pounding, or irregular heartbeats.
• Chest pain that is unexplained.
• Persistent fever after a procedure, or signs of infection around the surgical wound (redness, swelling, discharge).
• Sudden change in feeding behaviour in an infant, with sweating, breathlessness during feeds, or refusal to feed.
• Reduced wet nappies, sunken eyes, or other signs of dehydration in a young child.

The cardiac team will usually give you specific instructions about what to watch for based on your child’s particular defect. Keep their contact details easily accessible.

Frequently Asked Questions

Was my child’s heart defect caused by something I did?

Almost always, no. Most CHDs occur without any identifiable cause, and the defects form in the very early weeks of pregnancy. Even when known risk factors are present, most pregnancies result in a structurally normal heart. Self-blame is understandable but rarely justified.

Will my child be able to live a normal life?

Most children with CHD today grow into adolescence and adulthood and lead active, full lives. The exact outlook depends on the specific defect and the response to treatment, but for the majority of common defects the long-term outlook is reassuring. Lifelong cardiology follow-up is an important part of staying well.

Can a heart defect close on its own?

Yes, some defects can. Small ventricular septal defects often close during early childhood, some small atrial septal defects close spontaneously, and a patent ductus arteriosus may close in the first weeks of life. The cardiologist will monitor and advise whether watchful waiting or treatment is appropriate.

What is the difference between a catheter procedure and surgery?

A catheter procedure is performed through a thin tube inserted into a blood vessel, usually in the groin, without opening the chest. Surgery involves an incision in the chest, and in most cases the use of a heart-lung bypass machine while the heart is repaired. Catheter procedures generally allow faster recovery, but not every defect can be treated this way. The pediatric cardiology and surgical team decides the best approach for the specific defect.

Will my child need more than one operation?

It depends on the defect. Many defects are repaired with a single operation and need only routine follow-up afterwards. Complex defects, particularly single-ventricle conditions like hypoplastic left heart syndrome, are managed through a planned series of operations. In some cases, a repaired valve or conduit may need to be replaced as the child grows.

How often will my child need check-ups?

Visits are most frequent in the months after a procedure or surgery, then gradually spaced out. For many children, annual or every-two-year visits become routine. The cardiologist sets the schedule based on the specific defect and the child’s progress.

Can my child take part in sports?

Most children with CHD can be active, and exercise is encouraged. The cardiologist will advise on the level and type of activity that is suitable. Some children with specific conditions are asked to avoid intense competitive sports, but few are asked to avoid activity altogether.

Are vaccines safe for a child with CHD?

Yes, routine childhood vaccinations are generally encouraged for children with CHD. Some children with significant defects also benefit from additional protections such as annual influenza vaccination. The pediatric and cardiology team will guide you on the schedule, especially around the time of surgery.

When does my child need antibiotics before a dental procedure?

Children with certain CHDs — including unrepaired cyanotic defects, prosthetic valves, recently repaired defects with prosthetic material, and a history of endocarditis — are usually advised to take antibiotics before certain dental procedures. Your cardiologist will tell you whether this applies to your child and provide a wallet card or letter to share with dentists.

Will my child remember the surgery?

Infants and very young children do not have specific memories of surgery. Older children may have some memory of the hospital experience. Honest, age-appropriate explanations before and after the procedure, and support from child-life specialists or pediatric psychologists where available, help children process the experience.

Conclusion

A diagnosis of congenital heart disease changes the path a family expected, but it does not have to define a child’s future. The progress of pediatric cardiology and cardiac surgery over the past several decades has been remarkable: defects that were once not survivable are now routinely treated, and most children with CHD grow up to lead active lives with their families, in school, in sport, and eventually in work and relationships.

The shape of care has changed too. CHD is now understood as a lifelong condition that calls for a team relationship rather than a one-time fix. Early diagnosis, careful timing of intervention, attention to growth and development, and steady follow-up into adulthood are the elements that together produce the best long-term outcomes. Within that framework, every child’s plan is individual — built around the specific defect, the child’s response, and the family’s circumstances. The conversations you have with your child’s cardiologist, surgeon, and the wider care team are the place where those decisions take shape.