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Pediatric Cardiology · Parent Resource

Congenital Heart Disease:
A Parent's Guide

Written by Dr. George Akhobadze — pediatric anesthesiologist with 14 years of experience in congenital heart surgery and pediatric intensive care. This guide translates complex medical information into clear, compassionate language for families navigating a CHD diagnosis.

14 Years Clinical Experience Congenital Heart Surgery Unit Pediatric ICU Specialist
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Educational Use Only — This guide is for educational purposes only. Always follow the advice of your child's cardiologist, cardiac surgeon, and medical team. Every child's heart condition is unique — this information does not replace personalised medical guidance.

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Section 01
What is CHD
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Section 02
Most Common Defects
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Section 03
Diagnosis Explained
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Section 04
Before Surgery
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Section 05
After Surgery
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Section 06
Questions to Ask
01 / 🫀

What is Congenital Heart Disease?

Congenital heart disease (CHD) refers to structural problems with the heart that are present from birth. The word "congenital" simply means "present at birth" — it does not mean the condition was caused by anything the parents did or did not do during pregnancy.

The heart begins forming in the first few weeks of pregnancy. During this rapid, complex development, the chambers, valves, and blood vessels must grow and connect in a very precise way. When this process doesn't follow the expected path, a structural difference results — this is a congenital heart defect.

Most CHDs affect how blood flows through the heart and out to the lungs and body. Some cause too much blood to go to the lungs. Others cause too little. Some mix oxygen-rich and oxygen-poor blood. Understanding which type your child has is the first step toward understanding their treatment.

1 in 100
births affected by CHD
40,000+
babies born with CHD yearly in the US alone
95%
of children now reach adulthood with modern care
Types of CHD — Overview
  • Holes in the heart — openings between chambers that should be closed (VSD, ASD)
  • Valve problems — valves that are too narrow, leaking, or missing
  • Vessel abnormalities — arteries or veins connected the wrong way or in the wrong place
  • Complex defects — combinations involving multiple structures at once
  • Cyanotic defects — defects that cause the blood to carry less oxygen, leading to bluish skin (cyanosis)

Important: Having CHD does not mean your child is fragile or cannot live a full life. With the extraordinary advances in pediatric cardiac surgery over the past three decades, the vast majority of children born with even complex heart defects go on to lead active, healthy lives.

02 / 🔬

The Most Common Defects

There are over 40 recognised types of congenital heart defect. Below are the five most common, explained in plain language for parents. Each one has a very different impact on the heart, and each is managed differently.

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VSD
Ventricular Septal Defect
A hole in the wall (septum) between the heart's two lower chambers (ventricles). Blood leaks through the hole, making the heart work harder. Small VSDs often close on their own. Larger ones may need surgery or a catheter-based closure procedure.
Most common — ~30% of CHDs
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ASD
Atrial Septal Defect
A hole between the two upper chambers (atria). This allows oxygenated blood to mix with de-oxygenated blood, forcing the heart to work inefficiently. Many are detected only in childhood or adulthood. Small ones can close spontaneously; larger ones need repair.
~10% of CHDs
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ToF
Tetralogy of Fallot
A combination of four heart abnormalities occurring together: a VSD, a narrowed pulmonary valve, a thickened right ventricle wall, and an aorta positioned over the VSD. It causes low oxygen levels and was historically a cause of "blue baby" syndrome. Corrective surgery is highly effective.
~10% of CHDs · cyanotic type
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TGA
Transposition of the Great Arteries
The two main arteries leaving the heart — the aorta and pulmonary artery — are switched. This means blood circulates in two separate loops and almost no oxygen reaches the body. It is a surgical emergency that requires repair in the first days or weeks of life. With surgery, outcomes are excellent.
~5% of CHDs · critical type
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CoA
Coarctation of the Aorta
A narrowing of the aorta — the main artery that carries blood from the heart to the rest of the body. The narrowing forces the heart to pump much harder to push blood through. It can cause high blood pressure in the arms and weakness in the legs. Treatment is by surgery or balloon dilation via catheter.
~8% of CHDs
03 / 📋

Understanding Your Child's Diagnosis

After your child is suspected of having a heart defect, their team will use one or more imaging and diagnostic tests to understand the anatomy of the heart. Here is what the most common tests involve and what they can tell doctors.

ECHO
Echocardiogram
An ultrasound of the heart. Safe, painless, and uses sound waves — no radiation. It shows the structure of the heart in real time: chamber sizes, how valves open and close, and blood flow direction. It is the most important tool for diagnosing CHD. Can be done even in the womb (fetal echo) from 18–20 weeks.
Cardiac Cath
Cardiac Catheterisation
A thin, flexible tube (catheter) is inserted into a blood vessel and guided to the heart. It measures precise pressures inside the heart chambers and allows doctors to see detailed blood flow patterns. It can also be used to treat certain defects — for example, closing a hole or widening a narrowed vessel — without open surgery.
Cardiac MRI
Magnetic Resonance Imaging
Uses magnetic fields and radio waves to create detailed 3D images of the heart and large vessels. No radiation. Particularly useful for measuring exact volumes and function when ECHO images are limited. Often used in follow-up care for complex defects repaired in infancy. Younger children may need sedation to stay still.
CXR
Chest X-Ray
A simple X-ray of the chest to assess heart size and shape, and to look at the lungs. Often the first test done. It can show whether the heart is enlarged or if the lungs are receiving too much or too little blood flow.
ECG / EKG
Electrocardiogram
Records the electrical activity of the heart using electrodes placed on the skin. Completely painless. Shows heart rate and rhythm, and can reveal if chambers are under strain. Does not show anatomy but is an important part of the full assessment.
Pulse Ox
Pulse Oximetry
A small clip placed on a finger or toe that measures the oxygen level in the blood. Quick, painless, and non-invasive. A reading significantly below 95% can be the first sign that a baby has a heart defect requiring attention.
How to Read Your Echo Report
  • The report will describe each structure: the four chambers, four valves, and the major vessels
  • "Mild/moderate/severe" describes how significant a problem is — not an emergency score
  • Ejection fraction (EF) measures pumping strength — normal is typically 55–70%
  • "Trivial" or "trace" findings are almost always clinically insignificant
  • Ask your cardiologist to go through the report with you line by line — this is your right as a parent
04 / 🏥

Before Surgery

Learning your child needs heart surgery is one of the most frightening moments a parent can experience. Understanding what to expect at each stage can help reduce anxiety and help you feel prepared — for yourself and for your child.

How to Prepare Your Child (and Yourself)
  • Use age-appropriate language — tell young children the doctor will "fix their heart so it works better"
  • Bring familiar comfort items: a blanket, stuffed animal, or favourite toy
  • Follow fasting instructions exactly — this is critical for anaesthesia safety
  • Prepare a list of all current medications, including over-the-counter items and supplements
  • Arrange practical support at home for siblings and pets — surgery and ICU stay may be 7–14 days
  • Ask the hospital about family accommodation options near the ICU
  • It is completely normal and healthy to feel overwhelmed — ask for a social worker or family support coordinator

The Day of Surgery — What to Expect

Early morning
Admission and preparation
Your child will be admitted, weight and vitals checked, consent forms signed. A nurse will place an IV and may give a mild sedative to help your child relax before entering the operating theatre.
Anaesthesia induction
Going to sleep
The anaesthesiologist (often me, or a colleague) will administer anaesthetic — usually by breathing a gentle gas or through the IV. Your child will be asleep within seconds and feel nothing. One parent is sometimes permitted to the threshold of the room.
During surgery
The operation
Most open-heart surgeries use cardiopulmonary bypass — a heart-lung machine that temporarily takes over the work of the heart and lungs. The surgeon works on the still heart. Duration varies greatly: 2–8 hours depending on complexity. The team will update you periodically.
Post-surgery
Recovery room → ICU
Your child will go directly to the Pediatric ICU (PICU). They will be sedated, on a breathing machine (ventilator), and have multiple lines and tubes. This is expected and temporary. You will be able to see them as soon as they are settled.
Questions to Ask the Surgical Team Before the Operation
  • What exactly will be repaired or reconstructed during this surgery?
  • Will my child need cardiopulmonary bypass, and for how long?
  • What are the main risks specific to my child's anatomy and condition?
  • How many times has your team performed this specific procedure this year?
  • What is the plan if complications arise during surgery?
05 / 💊

After Surgery: The ICU and Recovery

The first time you see your child in the ICU after heart surgery can be shocking — tubes, monitors, machines. I have sat with hundreds of families in this moment. Please know: almost everything you see is temporary, expected, and a sign that your child is being carefully watched.

Tubes and Monitors — What They Are

ETT / Vent
Endotracheal Tube / Ventilator
A breathing tube through the mouth connected to a machine that breathes for your child. Used while still sedated or if the lungs need support. Most children are extubated (tube removed) within 12–48 hours of surgery.
Chest Drain
Chest / Mediastinal Tube
Thin tubes through the chest wall draining any fluid or blood from around the heart and lungs. They prevent dangerous accumulation. Usually removed on day 2–4 when drainage reduces.
Art Line
Arterial Line
A thin catheter in an artery (usually wrist) that continuously measures blood pressure and allows blood draws without needle sticks. A normal part of ICU monitoring after cardiac surgery.
CVP Line
Central Venous Catheter
A line into a large vein, often in the neck or groin. Delivers medications and fluids directly to the central circulation. Also measures pressures inside the right side of the heart.
Pacing Wires
Temporary Pacing Wires
Thin wires attached to the outside of the heart during surgery and brought through the skin. They allow the team to electrically pace the heart if needed. Removed before discharge when no longer required.
Foley Cath
Urinary Catheter
Measures urine output precisely, which is an important indicator of kidney function and fluid balance. Removed as soon as the child is awake and mobile enough to use a bedpan or toilet.
Pain Management After Cardiac Surgery
  • Your child will receive around-the-clock pain medication — they will not be left in pain
  • Opioids (like morphine or fentanyl) are used safely in the first 24–48 hours for severe pain
  • Regular paracetamol / acetaminophen is a backbone of pain control at all ages
  • Older children can use a PCA — a button they press themselves to receive safe, measured doses
  • Tell the nurse immediately if your child seems distressed or in pain — advocates matter

Recovery Timeline

Day 0–1 (Post-op)
ICU: Sedated and ventilated
Your child remains sedated on the ventilator. Vital signs are monitored continuously. The focus is on stabilising heart function, blood pressure, and fluid balance. This is the most intensive phase of care.
Day 1–3
Waking up, breathing tube removed
Most children are extubated within 24–48 hours. Sedation is reduced and your child begins to wake up. This can be a distressing time for parents — they may seem confused, uncomfortable, or try to pull at tubes. This is normal.
Day 3–5
Drains removed, first steps
Chest drains and most monitoring lines are removed. Oral medications begin. Older children begin sitting up, then standing with physio support. The body begins healing from the inside — the chest wire heals over 6–8 weeks.
Day 5–10
Step-down ward
Transfer from ICU to a cardiac ward. Less monitoring, more independence. Feeds improve. Many children become surprisingly playful again. This is a significant milestone for families.
Day 7–14
Discharge home
Most children are discharged with a clear home care plan, medication schedule, follow-up appointments, and wound care instructions. You will be taught what to watch for and when to call the team.
06 / 💬

15 Questions to Ask Your Doctor

These questions are drawn from the conversations I have witnessed — and participated in — with families over 14 years. A great medical team welcomes these questions. Write them down and bring this list to every appointment.

At Diagnosis
  1. 01Exactly which part or parts of my child's heart are affected, and can you show me on a diagram?
  2. 02Is this a condition that will need one surgery, multiple surgeries, or can it be managed with medication?
  3. 03How urgently does this need to be treated — days, weeks, or can we take more time to plan?
  4. 04Are there any activity restrictions I need to follow right now while we plan treatment?
  5. 05Should I seek a second opinion, and are you comfortable with me doing so?
Before Surgery (Pre-operative)
  1. 06What is the name of the specific surgical procedure being planned, and what exactly does it do?
  2. 07Who will be the surgeon, and how many times have they performed this specific operation?
  3. 08What are the realistic risks and potential complications for my child — including short-term and long-term?
  4. 09What happens if we choose not to proceed with surgery — what is the natural history of the untreated condition?
  5. 10What should I tell my child about what is going to happen, and are there child life specialists to help?
After Surgery (Post-operative & Follow-up)
  1. 11When can my child return to normal activities — school, sports, play?
  2. 12Will my child need to take medications long-term, and what are the side effects I should watch for?
  3. 13What are the specific signs of complications at home that should make me call the hospital or go to emergency?
  4. 14How often will my child need follow-up appointments and for how long — is this lifelong?
  5. 15As my child grows into a teenager and adult, what will they need to know about managing their own heart health?
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From a doctor who has stood in that operating theatre, and sat with your families in waiting rooms at 3 a.m.: you are not alone. Ask every question. Advocate for your child. And trust that the team around your child's bed wants the same outcome you do — a long, full, beautiful life for your little one.