Last updated on January 7, 2022
Content By: Dr. Nikita Toshi BDS, Assistant Manager (Medical Review), Dr. Ritu Budania MBBS, MD (Pharmacology) Head, Medical Affairs
Last updated on January 7, 2022
As a new mother or father, it is only natural that you are worried about your child and their health. When they fall sick or hurt themselves you rush to their side immediately. With a condition like Tetralogy of Fallot, a congenital heart defect, it may at first sound distressing to hear and with good reason. However, after learning what this condition is and knowing about the various treatment options to manage this, it can help relieve some of the worries that you may have at first felt.
Congenital heart diseases are defects in the heart that can occur in the baby before birth. There are many types of congenital diseases, Tetralogy of Fallot is one such condition that affects the blood flow in the heart. One common sign of this condition is that a baby’s skin may appear bluish. Babies diagnosed with tetralogy of fallot usually require immediate treatment to prevent further complications.
While this can seem daunting, understanding the diagnosis and various prevention and treatment methods can help relieve the stress and anxiety around the condition. Read on to find out everything about the tetralogy of fallot in the baby.
As a new mother or father, it is only natural that you are worried about your child and their health. When they fall sick or hurt themselves you rush to their side immediately. With a condition like Tetralogy of Fallot, a congenital heart defect, it may at first sound distressing to hear and with good reason. However, after learning what this condition is and knowing about the various treatment options to manage this, it can help relieve some of the worries that you may have at first felt.
Congenital heart diseases are defects in the heart that can occur in the baby before birth. There are many types of congenital diseases, Tetralogy of Fallot is one such condition that affects the blood flow in the heart. One common sign of this condition is that a baby’s skin may appear bluish. Babies diagnosed with tetralogy of fallot usually require immediate treatment to prevent further complications.
While this can seem daunting, understanding the diagnosis and various prevention and treatment methods can help relieve the stress and anxiety around the condition. Read on to find out everything about the tetralogy of fallot in the baby.
Written by
BDS, Assistant Manager (Medical Review)
Reviewed by
MBBS, MD (Pharmacology) Head, Medical Affairs
Tetralogy of Fallot is a rare heart condition that is caused by four different but related, heart defects that can occur during birth. Together, these defects can cause an increase of deoxygenated blood in the baby’s bloodstream.
Four conditions that together cause Tetralogy of Fallot are:
Because of this, children and infants who suffer from this defect may have slightly blue-tinged skin. This is also why the Tetralogy of Fallot is a cyanotic heart defect, cyanosis – referring to the blue discolouration of the skin. However, there is also another Tetralogy of Fallot symptoms that you’ll need to look out for in your child.
Tetralogy of Fallot is often diagnosed at infancy or soon after. However, in some cases, this condition might not be detected until the baby reaches adulthood.
Tetralogy of Fallot is shown to occur in around 5 out of 10,000 births globally. While this heart defect was first identified over 120 years ago, its exact cause is yet to be known. Approximately 15% of individuals suffering from Tetralogy of Fallot have certain genetic abnormalities related to other birth defects.
In India, around 4 out of 1000 babies can suffer from congenital heart defects. And Tetralogy of Fallot comprises 7% to 32% of them.
A study conducted on 819 patients who have undergone Tetralogy of Fallot repair surgery between the ages of 10, 20 and 30 years showed survival rates of 95.8%, 92.7% and 90.5%.
Children who have been diagnosed with Tetralogy of Fallot usually need to go for regular checkups with a cardiologist for the rest of their lives. They may also have some lifestyle restrictions in order to prevent complications arising in the future. In some cases, multiple surgeries may also be required to treat this cyanotic heart defect.
Tetralogy of Fallot can be fatal if not treated properly and quickly enough. Some complications of tetralogy of fallot include bacterial and viral heart infections, arrhythmias or irregular heartbeat issues, blood clots, heart failure and in worst cases death.
This is why, in most cases, corrective surgery is performed within the first year after birth to prevent complications from developing later on.
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The signs of Tetralogy of Fallot are visible a few weeks after the birth. The symptoms may also vary based on the intensity of the condition. An early diagnosis of Tetralogy of Fallot can help your child get treated in time and avoid future complications. The symptoms of tetralogy of fallot in Indian infants include:
Passing out or seizures
Bluish skin
Breathlessness
Having trouble breastfeeding or eating
Irritability
Heart murmur
Fainting/Weakness
Less stamina
The abnormally rounded shape of nail beds
Babies who have been diagnosed with tetralogy of fallot may sometimes experience sudden bluish discolouration in their skin, lips or nails. This is usually accompanied by crying, discomfort or agitation. These episodes are called tet spells and they occur due to a sudden drop in blood-oxygen levels.
Tet spells occur more commonly in infants between the age of 2 and 4 months.
It’s best to seek medical assistance immediately if your baby is:
Struggling to breathe
Turning blue
Showing signs of weakness
Extremely irritable, agitated or uncomfortable
Experiencing seizures
Dizzy or showing signs of fainting
If you notice your child is having a tet spell or is generally turning blue, a quick first aid would be to lay your child on the side and lift his/her knees up against the chest. This can temporarily help increase the blood flow to the lungs.
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Tetralogy of Fallot in babies usually occurs in the pregnancy stage when the baby’s heart is being developed. While the actual causes of tetralogy of fallot are unknown, the condition comprises of 4 main heart defects:
An opening or a hole is present in the wall between two lower chambers (ventricles) of the heart on both sides.
Due to this, oxygen-rich blood flows into the right ventricle and mixes with deoxygenated blood in the pulmonary artery, which goes to the lungs.
This may cause a baby to appear blue since there is not enough oxygen in the bloodstream.
For ventricular septal defect treatment, the doctor might prescribe certain medications based on the severity of the symptoms, or might recommend opting for medical procedures like surgical repair or catheter procedure.
A narrowing in the opening between two chambers of the heart, specifically the right ventricle and pulmonary artery.
It becomes more difficult for blood to flow out of the heart into the lungs because it has to go through this smaller opening.
The heart comprises of four chambers – two lower chambers and two upper chambers called the left and right ventricles.
When the heart is overworked, the lower right ventricle wall can thicken over time causing the heart to become stiff, weaken and then eventually fail.
In a normal healthy heart, the aorta is connected to the left ventricle.
In the tetralogy of fallot, the aorta may be positioned right above the heart wall that has a hole (ventricular septal defect).
Due to this, the aorta invariably receives both oxygenated and deoxygenated blood for both the left and right ventricles.
This weakens the original function which is to supply oxygenated blood to the rest of the body.
As mentioned briefly earlier, the exact cause of tetralogy of fallot remains unknown, however, there can be a few factors that can put your child at risk of developing this cyanotic heart defect. They include:
Having a Viral Illness During Pregnancy
A viral illness, such as rubella, during pregnancy, has been associated with the Tetralogy of Fallot. If you think you have a viral infection while pregnant, it’s best to seek medical attention at the earliest.
Poor Nutrition During Pregnancy
Proper diet and nutrition are necessary when pregnant to ensure a healthy pregnancy term for you and your child in order to prevent congenital heart defects like tetralogy of fallot in your baby. Therefore, if you are pregnant or are planning a pregnancy, do seek the advice of your gynaecologist for your dietary requirements throughout your pregnancy.
Drinking Alcohol During Pregnancy
Drinking alcohol during pregnancy can cause problems for your unborn baby and should be avoided at all costs.
An Older Mother (Above 40 Years Old)
Mothers older than 35 years old have an increased risk of conceiving babies with various birth defects, including heart conditions such as the Tetralogy of Fallot.
Family History of Congenital Heart Disease
If any of the parents have a history of Tetralogy of Fallot, the child may be at the risk of developing the same. In such cases, it is always better to have a detailed ultrasound of the child’s heart in its early stages. If any abnormality or defect is noticed in your child, consult with your doctors and get Tetralogy of Fallot treatment at the earliest.
A Baby With Down syndrome or DiGeorge syndrome
Tetralogy of Fallot may develop in babies with Down’s syndrome or DiGeorge syndrome.
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If your doctor suspects your child may have a congenital heart defect, he/she may perform various diagnostic tests based on the symptoms your child may be showing. Some of the tests that the doctor may perform to rule out a tetralogy of fallot diagnosis include:
Monitoring Oxygen levels – A pulse oximeter can be used to measure the Oxygen saturation of baby
Echocardiogram (ECG) – This is a noninvasive test that emits sound waves to the heart. The echoes from these pulses are then received and displayed by a computer, enabling doctors to view the size, shape and movement of your baby’s heart valves or blood vessels. A Tetralogy of Fallot ECG may show abnormalities in heart valve and blood vessel function.
Electrocardiogram – An electrocardiogram shows the electrical activity happening in the heart every time it beats. This helps identify the extent of right ventricular hypertrophy (the thickening of the heart chamber), enlarged heart chambers and irregular heartbeat.
X-Ray – A Tetralogy of Fallot x-ray may show a heart larger than usual – usually in the shape of a boot. This is usually due to an enlarged right ventricle and can be a cause of grave concern if left untreated.
Cardiac Catheterization – This test is used to understand the structure of the baby’s heart in case surgery is required as treatment. In this procedure, a small tube called a catheter is inserted into a blood vessel in the groin and then guided carefully to the heart. This catheter contains a dye that enables the doctor to see the structure of the heart easily through an X-Ray.
During pregnancy, the baby’s heart is one of the first organs that starts to develop and so tetralogy of fallot in a baby can be detected as early as 8 weeks into the pregnancy through an ultrasound scan.
An early diagnosis of a congenital heart defect like tetralogy of fallot can go a long way in managing the condition effectively in the future. During your appointment, it’s best to let your doctor know about:
Your entire medical history and family history
All the signs and symptoms that your child is experiencing, no matter how small or big and even if it’s not related to heart issues.
When your child started showing symptoms, the exact frequency and intensity.
The medications (if any) you took during your pregnancy term, any treatment plans you were put on during pregnancy. Any medications your child has been taking since birth.
Any supplements, vitamins or over the counter medications you took during your pregnancy.
Your general lifestyle habits before and during pregnancy.
Tetralogy of Fallot is a condition that usually requires surgical treatment at the earliest after birth. Post diagnosis, you may be:
Referred to a paediatric heart surgeon who may determine the right course of treatment for your child.
Asked to schedule regular visits to the doctor – a paediatric cardiologist, to monitor your child’s heart health and lower the risk of any complications, as part of the tetralogy of the fallot management process.
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If and when tetralogy of fallot is detected in your child, the doctor may suggest any of the following Tetralogy of Fallot treatment options based on the symptoms and the severity of the condition:
Intracardiac Repair – This Tetralogy of Fallot surgery is an open-heart procedure. This procedure involves 2 main repairs:
Through this surgery, the functioning of the right ventricle is restored. Due to this, it eventually goes back to its normal thickness. The blood-oxygen level also increases.
Temporary Shunt Surgery – This Tetralogy of Fallot surgery is a temporary measure before undergoing intracardiac repair to help increase the flow of blood to the lungs. This is usually done in premature babies or those with underdeveloped or improperly formed pulmonary arteries.
In this surgery, a temporary tube, known as a shunt, is placed between the main artery – aorta and the pulmonary artery so that oxygen-rich and deoxygenated blood can circulate between the right side of the heart and either lung. When the doctor feels your baby is ready for intracardiac repair, the shunt is then removed during the procedure.
After surgery, your child will be taken to the Paediatric Intensive Care Unit (PICU) or Cardiac Surgical Unit (CSU). Your child’s healthcare provider may:
Continue giving antibiotics and pain medicine as a part of the management of Tetralogy of Fallot while in a critical care unit.
Place a breathing tube into the throat through the mouth during cardiac surgery.
Place a catheter in the bladder to drain urine during surgery while your child stays in a critical care unit.
Your child’s healthcare provider will monitor several parameters as part of the recovery:
Vitals – such as breathing, blood oxygen, blood pressure, temperature, etc.
The functioning of the heart – The doctor may use an echocardiogram to check well blood flows through your child’s heart chambers.
Complications, such as:
People who have had surgery to repair tetralogy fallot usually require lifelong care with a cardiologist to monitor the functioning of the heart and for any complications that may arise. Therefore, effective management of Tetralogy of Fallot may include frequent visits to the doctor, undergoing imaging tests and other diagnostic tests to evaluate the progress of treatment and also certain lifestyle and activity restrictions to prevent worsening of the condition.
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If you are a pregnant woman or one who is planning a pregnancy your doctor may recommend a few lifestyle changes to help lower the risk of your baby developing tetralogy of fallot in the womb. These include:
Being sick can lead to complications during pregnancy that may put the baby at risk. Expecting mothers need to be wary about contracting rubella (german measles), an infection that can put your child at risk of developing congenital heart disease. Here are some ways you can lower your risk:
Maintain good personal hygiene
Wash your hands with soap often
Stay away from those who may be sick
Wash vegetables and fruits thoroughly before consuming
During pregnancy, a woman must refrain from drinking alcohol and smoking in order to protect herself and her baby from serious health problems. Heavy exposure to environmental pollutants such as cigarette smoke may increase blood pressure for both mother and foetus, which can be dangerous for them throughout their lives. Other causes of high blood pressure include stress, lack of physical activity and being obese.
Eating a healthy diet and staying active during pregnancy is the best thing you can do for your baby. Not only do you give birth to healthier babies but it can also put both moms-to-be and their children on a better path toward long-term health.
The hormone changes, body aches and pains can all contribute to a lack of restful sleep. Pregnant women who do not get enough quality sleep may be more likely to:
Become depressed or anxious
Experience fatigue and daytime drowsiness
Have slower reaction times
Be more likely to gain excess weight and all these can impact the health of the baby
Therefore, being stress-free and enjoying your pregnancy as much as possible can go a long way in protecting your baby’s health as well. If you seem to be struggling with your mental health during pregnancy, seeking the support of your friends and family or even a qualified counsellor can help you cope with the anxieties around this stage of life.
Post-treatment, the doctor may recommend certain lifestyle changes to help effectively manage tetralogy of fallot in your child. They include:
Maintaining good oral hygiene – Your child’s doctor may prescribe medication before specific oral or dental procedures to lower their risk of developing heart infections such as endocarditis.
Limiting certain exercises and activities – Your child’s doctor may ask them to avoid or limit a few types of physical activity, especially, ones that are strenuous or tedious that can put pressure on your child’s heart. While this can differ from individual to individual it is best to consult your child’s doctor to understand what activities are safe for your child to perform.
Adults with congenital heart defects would also have lifestyle restrictions and may need counselling around:
Employment-based on your condition, a team of specialists may help you choose the right jobs/roles that help protect your heart and lower your risk of any complications.
Pregnancy having heart rhythm problems or a heart defect can increase your risk of complications during pregnancy and hence, the decision to conceive should be thoroughly discussed with your doctor especially if you have congenital heart disease.
Seek Support of Friends and Family Members
Friends and family members can provide emotional support to the expectant mother. They can help encourage and ease stressors around pregnancy while also providing the physical help the mother requires during pregnancy and even after birth.
Attend Counselling Sessions with a Qualified Mental Health Therapist
If you’re struggling with your mental health during pregnancy or after birth, attending counselling sessions with a qualified mental health therapist can also help relieve the stresses and anxieties surrounding this stage of life. Mental health therapists are trained to listen without judgement and can offer practical solutions to help:
Join a Support Group
Sometimes knowing that you are not alone in your struggle can go a long way in building courage and confidence within yourself. Joining a support group of new mothers can help give you a platform to voice your concerns and also receive encouragement around your child’s health.
Increase Awareness of the Condition
It is a very rare condition, so it can be difficult for parents to know what Tetralogy of Fallot symptoms should they be concerned about. Therefore, increasing your knowledge and understanding about congenital heart defects can help you be well prepared mentally and physically for what may come.
Recording/Journalling Child’s Health
While tracking the progress of your child’s health is crucial from a medical standpoint, it can also somewhat serve as a motivator especially when you see how far your child has come. Seeing how your child is growing can also give a positive feeling and ease your worries around battling the condition over time.
Supplement your child’s treatment with the right health care products.
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Tetralogy of Fallot can be corrected with an open-heart surgery either immediately after birth or during infancy. At times, adults or teenagers who have Tetralogy of Fallot repaired in childhood may need additional surgery to correct any heart issues that may have developed over time.
The exact reason why the Tetralogy of Fallot develops is not always understood. Every year, around 1 % of babies born in the world suffer from congenital heart defects. Approximately 10% of these babies are diagnosed with the Tetralogy of Fallot. It is generally detected a couple of weeks or months after birth. Furthermore, the prevalence of TOF is considered to be around 1 in 3,000 live births.
After proper cardiac surgery, children with Tetralogy of Fallot have good survival chances with a great quality of life. Approximately 75% of infants who have gone through the repair surgery during infancy will survive well. A healthy lifestyle and regular follow-up are important factors that determine the survival of these patients.
Tetralogy of Fallot surgery may generally take around five to six hours. However, the preparation and recovery process further adds a couple of hours. The child is taken to the cardiothoracic operating room and the surgery is performed under general anaesthesia. After the procedure, the baby will be shifted to the cardiothoracic intensive recovery unit. The baby is likely to spend several days in this unit.
The main treatment options for tetralogy of fallot include intracardiac repair and temporary shunt surgery. They both are open-heart surgeries aimed at repairing heart defects and increasing the flow of blood to the lungs. Sometimes, children may require multiple surgeries to manage tetralogy of fallot complications. Your child’s doctor would be able to advise you on the right treatment procedure required for the child.
Tetralogy of Fallot occurs when the heart cannot develop properly within the eight weeks of fetal growth. The disorder can occur due to genetic as well as environmental factors. For a majority of babies with Tetralogy of Fallot, no genetic cause was identified. Some of them may have other defects or health issues with TOF associated with a genetic syndrome.
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