Congenital Heart Disease in Children: What Parents Need to Know 

Many parents receive a Congenital Heart Disease diagnosis feeling terrified and alone. This guide is for them. Congenital Heart Diseases include heart defects like septal defects, valve abnormalities and vessel defects. This blog is going to be an important piece of information sharing the definition of CHDs, types of CHDs along with the definitions of all the important parts of this topic.  

You will also be getting valuable information regarding the symptoms which you should recognise and act upon swiftly in order to avoid further complications. A Congenital Heart Disease cannot be taken lightly. The issue needs to be handled in a medically professional manner. Let us enter into the details of this informative blog. 

What Is Congenital Heart Disease? 

A Congenital Heart Disease or CHD includes numerous structural heart issues, heart defects and valve abnormalities that are already present at birth. It is not one disease but a spectrum of structural abnormalities. It happens when the heart and/or its major blood vessels do not develop properly in the initial pregnancy months, generally the first two months. A CHD is considered severe or mild based on the causes, symptoms and effects over lifelong activities. 

A CHD needs immediate and effective treatment after a confirmed diagnosis. About 500,000 children are born with CHD in Africa each passing year. Current pediatric estimates state that there are about 2 to 14 cases of CHDs per 1,000 births in the region. The symptoms of CHDs to look for are fatigue, trouble breathing, and bluish tint on skin and lips. However early detection always avoids future complications and uncertainties. 

Types of Congenital Heart Defects Explained Simply 

Congenital Heart Diseases are of three important types. These types are ;  obstructive defects, septal defects and cyanotic defects or the Blue baby syndrome. It is extremely important to understand in detail about the types of CHDs. These defects can be simple and complex based on the causes and symptoms occurring thereafter. 

Parents need to pay attention to the symptoms and seek immediate medical care to correct further complications. A Congenital Heart Disease requires immediate medical intervention to stop related issues from happening in the future. Let us understand in detail about the three types of CHDs: 

1. Obstructive Defects (The "Stenosis") 

These types of heart defects in babies are also called stenosis. The stenosis or obstructive defects happen when the blood vessels over the heart walls are blocked or are too narrow for blood to pump in an efficient manner. Pulmonary Stenosis is actually a narrowing of the pulmonary wall that slows down the flow of blood from the heart to the lungs. 

The aorta gets narrow leading to restricted supply of blood. This situation is also known as the Coercion of the Aorta. A constant and efficient supply of blood to and from the heart is absolutely important not only after birth but also in people of any age group. This type of Congenital Heart Diseases should be treated at priority to avoid complications.

2. Septal Defects (The "Holes")

Septal Defects are abnormal openings in the walls that divide the heart chambers. Septal Defects cause poor supply of oxygen rich blood. Septal Defects include Atrioventricular Canal Defects, Ventricular Septal Defects and Atrial Septal Defects. These conditions differ according to the gravity and location of the condition. 

3. Cyanotic Defects (The "Blue Baby" Syndrome)

Cyanotic Defects are highly complex heart defects in babies that change blood flow leading to an oxygen-poor blood supply to the body parts. This condition is considered highly alarming and it mainly affects the important arteries connecting the heart to the other parts of the body. This type of defect puts a high pressure over the circulatory system and this type of defect should be treated with priority. 

Ventricular Septal Defect (VSD) — Hole Between the Heart's Lower Chambers

Ventricular Septal Defect or VSD is a common congenital heart defect featured by a hole in the wall or septum that divides the lower chambers of the heart. This hole makes the oxygen rich blood to mix with oxygen poor blood. This ultimately leads to a higher pressure on the heart while pumping the blood. 

There are two types of VSDs: Small VSDs and Large VSDs. Symptoms include poor weight gain, fatigue, sweating during feeding and frequent respiratory issues. Small VSDs normally correct naturally but Large VSDs need medical care. An Echocardiogram test is used to confirm the diagnosis of this condition. Medications and treatment are available for this disease. 

Atrial Septal Defect (ASD) — Hole Between the Upper Chambers

Atrial Septal Defect or ASD is a congenital heart condition that prevails at birth. An ASD is a hole in the wall or the atrial septum) that divides the heart’s upper chambers. This hole makes oxygen-rich blood to get from the left atrium to the right atrium. This leads to a high pressure over the heart and lungs too. 

An ASD is normally difficult to detect immediately after birth and it is detected later. This condition is responsible for the enlargement of the right side of the heart. There are four important types of ASDs based on the location of the hole; Primium, Secundum, Coronary Sinus and Sinus Venosus. 

An ASD causes symptoms like fatigue, shortness of breath, frequent respiratory infections or skipped heart beats. Treatment options available for this condition include Transcatheter Closure and Open Heart Surgery.

Patent Ductus Arteriosus (PDA)

A Patent Ductus Arteriosus or PDA is a Congenital Heart Disease where the normal fetal blood vessel that bypasses the lungs doesn't close after birth. This existing opening makes oxygen-rich blood flow from the aorta back into the lungs. This adds to the pressure on the heart. This heart defect in babies is common in premature toddlers. 

Basically the vessels that generally close at birth remain open. This is the exact cause of a Patent Ductus Arteriosus or PDA. Symptoms include difficulty breathing, heart failure, high blood pressure, difficulty in gaining weight, increased heart rate and quick breathing. Treatment options like medications, surgery, and Cardiac Catheterization are available for this defect. 

Tetralogy of Fallot — The 'Blue Baby' Condition

Tetralogy of Fallot or ToF is a serious congenital heart defect in babies that changes the normal blood flow from the heart. It includes four heart issues that allow oxygen-poor blood to circulate through the body turning the nail beds, lips and skin blue in colour. This is the exact cause why this condition is called The Blue Baby Syndrome.  It combines four defects.

Symptoms of a ToF include difficulty breathing, severe episodes of purplish and bluish skin, trouble feeding, difficulty gaining weight, and heart murmur. This being a serious heart condition requires surgery. 

Pulmonary Stenosis

Pulmonary stenosis is a restricting of the valve between the lungs' arteries and right ventricle. This condition is responsible for reduced blood flow. This health condition causes extra stress over the pumping of the blood. Symptoms of the condition include shortness of breath, heart murmur, fainting and fatigue.

Non-invasive and imaging techniques are available to confirm the diagnosis of this condition. Even CT scans and MRI help in this situation. Surgeries, Balloon Valvuplasty and other treatments are available for Pulmonary Stenosis. 

Signs and Symptoms of CHD in Newborns and Children

Congenital Heart Diseases are of various types and come with numerous symptoms. The symptoms vary based on the age of children. Symptoms differ in newborns and in children of older age. Symptoms like poor feeding, laboured breathing, blue skin or difficulty in gaining weight are common during CHDs in children. 

Parents should recognise the symptoms and immediately seek medical care. This helps in treating the problem at the earliest and causes less stressful situations to happen. Parents should look for the following critical CHD symptoms in newborns and toddlers : 

Symptoms of CHDs in Newborns 

Bluish Skin 

One of the most common symptoms of a Congenital Heart Disease in newborn babies is bluish skin. A gray or blue tint over the tongue, nail beds, skin and lips indicate a prevalence of a CHD in newborn babies.

Heart Murmurs

If your pediatrician detects a whooshing using sound through a stethoscope then that can indicate that your child is suffering from a CHD. However some heart murmurs are harmless but seeking medical attention is important if regular heart murmurs are detected.

Excessive Sweating

Excessive sweating is another common sign of a CHD in younger and new born babies. If your baby is sweating excessively around the forehead or head then that can indicate a presence of a CHD in your child.

Quick Breathing or Tachypnea

Breathing faster than normal with chest pulling and flared nostrils is also another CHD symptoms in newborn babies that you should look for. 

Symptoms in Older Children

Regular Lung Infections

Parents should look for regular spells of lung infections in children. If your child is suffering regularly from lung infections like chest infections and colds then that can indicate a more serious condition like a CHD.

Shortness of Breath

Breathlessness is yet another sign of a Congenital Heart Disease to look for in children. If your child is experiencing extreme shortness of breath then parents should be on alert mode as this can indicate a CHD. 

Fatigue

A feeling of extreme tiredness and losing energy can be another symptom of a CHD in older children. If your child is feeling sleepy all the time then you should seek immediate medical care. 

Swelling or Edema

Swelling in the abdomen, legs, or around the eyes can be another important symptom to watch for in older children. Also pain in the chest area can indicate a CHD in older children. 

Warning Signs in Newborns — What to Watch in the First Days

There are some signs to look for in newborns during the first days. Here are those signs of Congenital Heart Disease to watch for : 

1. Feeding Difficulties & Difficulty in Gaining Weight 

The very first sign of the prevalence of a CHD in newborns is feeding difficulty and problems in gaining weight. If your baby takes a longer time for breastfeeding then you should get on alert mode and seek immediate medical care. One of the most obvious signs of a CHD in a newborn is challenges in feeding the baby. Also if your baby is not gaining appropriate weight then you should check if your baby is suffering from a CHD. 

2. Changes in Skin Color 

One of the most noticeable signs of a Congenital Heart Disease in newborns is a change in the skin colour. If you notice some greyish or bluish tints over the baby’s skin, lips, tongue, nail beds and near the eyes then you should immediately book an appointment with a CHD specialist. This condition happens when the supply of oxygen rich blood is improper through the body. 

3. Excessive Sweating

If your baby sweats excessively mainly around the scalp and forehead then you should immediately book an appointment with a CHD specialist. It happens normally during feeding. This is among the most obvious symptoms of a CHD. This happens when the pressure over the heart is more causing excessive sweating. 

4. Irregular Heartbeats and Laboured Breathing 

Irregular heartbeats are among the most noticeable symptoms of a CHD in newborn babies. Also if your baby is finding it difficult to breathe or is struggling to breathe normally then it is time for you to check if your baby is suffering from a CHD. Also paying close attention to the pulse rate is also important during this phase. 

Symptoms in Toddlers and Older Children

Congenital Heart Disease shows different symptoms in children of different age groups. Newborn babies show different symptoms and older children show different symptoms. Let us have a quick look at the symptoms of a CHD in toddlers and in older children : 

Symptoms of CHD in Newborn Babies 

• A toddler suffering from a CHD gets exhausted very quickly while playing or running. This is an important symptom of a CHD in a toddler.
• If your toddler is not gaining weight appropriately or is not developing structurally then you need to check your child for a possible CHD defect. 
• You should also check if your child is getting visible swelling in feet, angles or hands. This is also an important symptom of a CHD in toddlers. 
• You should even look if your child is developing a bluish tint over lips, skin, tongue and nail beds. This is a common symptom of CHD in infants. 

Symptoms of CHD in Older Children

• An older child suffering from a CHD may develop symptoms like chest pain and extreme fatigue. You should be alert if your child is getting such health complaints. 
• Also if your child is suffering from a condition of heart palpitation fluttering or racing then you should certainly book an appointment with a CHD specialist. 
• Dizziness and fainting is also another sign of a CHD to look for in children of older ages.
• Frequent chest infections are also common in an older child suffering from a Congenital Heart Disease. 

How Is Congenital Heart Disease Diagnosed?

A Congenital Heart Disease requires immediate medical care and treatment. It is confirmed by various methods including Postnatal Echocardiogram & Chest X-ray , prenatal ultrasound, Cardiac Catheterization and latest diagnostic procedures. Let us have a quick look at these procedures in detail : 

1. Postnatal Echocardiogram & Chest X-ray 

Postnatal echocardiogram and chest X-ray is amongst the most prominent and popular techniques through which a CHD is diagnosed. Pulse oximetry is a non-invasive technique that is used to confirm the diagnosis of this condition. An electrocardiogram is also available to confirm the diagnosis of a CHD in children. This test is also highly convenient and painless. 

2. Chest X-ray 

A Chest x-ray can also be used to confirm the diagnosis of a CHD in children. Chest x-ray is an easily available and even financially affordable technique of confirming the diagnosis of this condition. It is minimally invasive and does not cause much pain either.

3. Prenatal Ultrasound 

Prenatal ultrasound and Echocardiogram are used to understand the depth of the condition in children. Structural heart defects are clearly detected  and diagnosed through these types of diagnosis techniques. A specialised ultrasound is performed generally between 18 and 22 weeks of pregnancy which helps in confirming the condition.

4. Cardiac Catheterization

A Cardiac Catheterization is an invasive procedure where a flexible tube or catheter is inserted into a blood vessel of the child. This helps doctors to measure oxygen levels and blood pressure in the heart chambers. Though a Cardiac Catheterization is painful it is performed under deep sedation and anesthesia. 

Fetal Echocardiogram — Can CHD Be Detected Before Birth?

Absolutely, a Congenital Heart Disease can certainly be detected before birth. One of the most popular ways to detect this disease before birth is through a Fetal Echocardiogram. This is a specialized ultrasound that gives a meticulous view of the baby’s progressing heart. This helps the pediatric cardiologists to get an idea of the health condition, heart rhythm and function even in the womb.

The condition can be detected between the period window of 18 to 22 weeks of pregnancy. A routine anomaly can bring out the possibility and prevalence of this heart condition. Parents should not panic in such situations and try to be as calm and cool as possible. Emotional guidance is highly necessary during this phase. 

Treatment Options for Congenital Heart Disease

A congenital heart disease requires immediate medical attention and professional care. Medical science is advancing at a speed that humanity has never experienced before. This is the exact reason why the number of treatment options for every disease is increasing greatly. The same is true with the case of a CHD. There are numerous treatment options available for a CHD. Let us know in detail about these available treatment options : 

1. Heart Transplant

Heart transplant is among the most popular and effective treatment options for CHDs. Heart transplant is recommended when heart surgery is practically impossible in a case. Heart transplant is generally recommended in the case of severe CHDs.

2. Medications

Medications are always a part of a treatment for any disease in medical science. Medications including Ace inhibitors, beta blockers and diuretics can be used to treat the condition of a CHD. Medications are used to control the blood pressure and the effects of a CHD. Medications always help in this case to relieve the symptoms and signs related to the disease.

3. Catheter-Based Treatment  

Numerous structural defects can be treated without surgeries. Doctors put a thin tube or catheter through a blood vessel. This is normally done from the groin to the heart. This method is used to close the holes existing in the heart, place stents to allow the vessels to stay open and to widen the blood vessels. 

4. Watchful Waiting 

Watchful waiting is another treatment option available for a CHD. It includes active monitoring and understanding the gravity of the disease under medical guidance. It is generally recommended in the case of mild symptoms. There are chances of confusion in diagnosis. This is why doctors recommend a watchful waiting before proceeding with the actual treatment. 

5. Open Heart Surgeries

Open heart surgery helps in retrieving and rerouting the blood vessels. This helps in treating the cause of the disease. An open heart surgery medically corrects and repairs the holes in the heart and the damages of the valves. An open heart surgery can certainly treat newborn babies who are weak and extremely small. 

Open Heart Surgery in Children — What Parents Should Expect

Open heart surgery in children always brings an emotional breakdown for parents. This is mainly due to a separation, operation procedures, risk associated with it and hospital stays. However there is nothing to worry about as the entire procedure follows professional protocols and due medical care. Here is what parents can expect during the open heart surgery of their kids:

In the theatre : Parents should expect that the operation will last about 4 to 6 hours as it is a highly complex surgery. 

ICU recovery : ICU recovery involves monitoring, drainage tubes and breathing tubes. The ICU stays normally last for about 2 to 4 days.

Typical timeline : The entire procedure, treatment and recovery at hospital and at home can last for about several weeks. 

Emotional Support : Emotional support to parents and children is absolutely important in this matter. Parents need to stand emotionally strong as this has a direct link to the success rate of an open heart surgery. 

CHD Treatment in Kenya and Tanzania — What Is Available Locally

Congenital Heart Disease treatment in Kenya and Tanzania are conveniently available at its popular cities Institutions like Aga Khan University Hospital, Benjamin Mkapa Hospital, Jakaya Kikwete Cardiac Institute and Saifee Hospital in Dar es Salaam. The available treatment options include stenting, pacemaker implantation diagnostic services, CABG, complex surgeries and valve replacement. 

These treatments are easily available locally around Kenya and Tanzania. Parents can certainly choose the treatment options and hospitals according to the financial conditions and proximity. 

When Is Medical Evacuation Required for a Child with CHD?

Medical evacuation or medevac for a child having Congenital Heart Disease or CHD is required when the child suffers from an acute cardiac decompensation. This is a fatal complication. Complex defects that need cardiopulmonary bypass in centres are not available locally in Kenya and Tanzania. 

Consult with Marlin Medical Assistance for the best guidance and medical support. Marlin’s team is highly skilled and qualified to handle medically emergent situations. Medical evacuation is necessary in the case of severe Hypoxia or Arrhythmias, Refractory Tet Spells, Ductal-Dependent Lesions, Extracardiac Infections and Decompensated Heart Failure. 

Life After CHD Surgery — What Is the Outlook?

Most CHD suffering children lead normal lives post-repair. According to statistics, about 95% of patients with non severe CHD and about 69% of people with severe CHDs survive and lead a normal life even after adulthood. However there are certain lifestyle practices that you need to adopt to cope up with the situation well. Let us understand this outlook in detail and learn things through different perspectives:

1. Ongoing cardiology follow-up

Ongoing cardiology follow up is highly necessary in the case of a Congenital Heart Disease. Routine checkups including ECGs and MRI help in monitoring the condition of the heart. Specialised care helps in paying attention to what exactly is happening to the cardiological health of the baby. A follow up is necessary to monitor the CHD symptoms in newborns. Regular checkups with pediatric cardiologists or adult CHD specialists help in understanding and managing the condition well. 

2. Emotional and developmental considerations.

Emotional support after a CHD surgery is truly important. This is the time when your child needs to stabilize in emotional and physical terms. Try to engage your child in interesting activities and allow him to recover from the surgical memories. Add diet and exercise changes to daily life in order to support heart health.

3. Activity restrictions (if any)

There are certain activities that children need to avoid after CHD surgery. Vigorous play and contact sports should be completely avoided after a CHD surgery. Your child should be allowed to get time to recover from the CHD surgery. The entire recovery normally takes about 4 to 8 weeks. This is a crucial time when your child will gradually heal from the surgery. Pediatric cardiologists in Nairobi will advise you in this respect. 

CHD and Breastfeeding — Guidance for New Mothers

Congenital Heart Disease is not at all a rare condition in the world. There are a lot of mothers out there who are going through the same condition. Breastfeeding can be a challenging task for mothers whose babies are suffering from a CHD.

Breastfeeding matters a lot during this period as it acts as a way of immune protection, cardio stability, and brain development. Breastfeeding has always been an important way of the overall and efficient physical and mental development of the children. 

Liaising with cardiac nurses can always help in this regard. Breastfeeding is even necessary for maternal and medication safety during the kid raising. Breastfeeding is generally encouraged for babies with CHD but with some adaptations. Doctors often recommend shorter and more frequent feeds with upright position during a Congenital Heart Disease. 

Emotional Support for Parents of Children with Heart Defects

Emotional support for parents of children with heart defects is absolutely important. This is the time when parents need to stand strong to provide support to their suffering child. It is truly important for the parents of the baby suffering from CHD and this helps in recovering quicker and more efficiently. 

Parents face emotional challenges due to isolation from child, anxiety, depression, routine hospital visits, and financial stress. Here is how you can manage the emotional pressure arising out of Congenital Heart Diseases : 

Normalise Grief, Fear and Guilt 

Remember that CHDs are not highly uncommon in nature. There are a number of parents in your country who are going through the same mental trauma. You should try to stay as calm and as cool as possible so that your child finds things stable around which will automatically smoothen the recovery and treatment process. Do not watch videos that tend to unnecessarily increase confusion and fear. 

Get Added to Peer Support Groups

Considering getting added to peer support groups. Peer support groups will make things convenient and easier to cope up with. This will ensure a feeling of unity during the time of such a health crisis. Be positive and post positive things around to boost morale. A CHD cannot be more powerful than what you think about it so be optimistic. 

Seek Assistance from Marlin’s Support Team 

Marlin Medical Assistance is always with you and you can approach the team for any confusion, question or query in your mind regarding the condition. Our team is well qualified, experienced and informed to handle traumatic and emergency situations.