How many live with congenital heart disease?

Author Ольга Кияница


Among all congenital defects, heart defects are the most common. Perhaps this is due to the most early and intensive development of the cardiovascular system in the first weeks of pregnancy. Whatever it was, but it is for newborns and their parents that it may later be necessary to endure the often vital surgical interventions.

Congenital heart defects (CHD) are organic disorders of the structures of the heart or of the adjacent vessels that are present from birth. The danger of defects lies in the fact that the blood circulation system can be seriously disturbed, both within the organ itself, and along a small or large circle of blood circulation.

Infant mortality due to CHD decreased by almost 60% from 1987 to 2005, as evidenced by a study published in the journal American College of Cardiology for September, 2010.

Most heart defects have no known cause. Despite this today, thanks to the successful modern prenatal care and cardiac surgery, many children with CHD can fully develop and move into adulthood. Yet the question of how much one lives with congenital heart disease can be considered open.The answer to it most often depends on the severity and size of the defect itself.

Video: Congenital Heart Disease

Description of congenital heart disease

In one infant out of 100 born with a heart defect (a problem with the structure of the heart), the condition is defined as unique. This is due to the fact that there are more than 40 known types of congenital heart defects (noted by the Children's Heart Foundation) and even more, which are unique. Throughout life, these differences persist.

“Two adult patients did not have the same symptoms, so each of them is special with its own rare disease,” explains Paula Miller, 63, from Memphis, who was a nurse and was born with congenital heart disease. She is currently the manager of work with members of the Association of Adults with Congenital Heart Diseases (ACHA). For her part, she provides support for adults with heart defects.

Heart defects are among the most common congenital defects that occur in 1% of children born alive (or 2-3% with the inclusion of bicuspid aortic valve).

In 2013, 34.3 million people were identified by CHD. In 2010, 223,000 people died as a result of this disease, although compared with 278,000 in 1990, this figure decreased. [1 - Lozano, R (Dec 15, 2012). "Global and regional mortality for the age groups of 20 and 2010:". Lancet 380 (9859): 2095–128.]

For congenital heart defects that occur without unfavorable heredity (de novo), the probability of relapse in the offspring is 3-5%. [2 - Canobbio, Mary M .; Warnes, Carole A .; Aboulhosn, Jamil; Connolly, Heidi M .; Khanna, Amber; Koos, Brian J .; Mital, Seema; Rose, Carl; Silversides, Candice (12 January 2017). "Health Care Professionals of the American Heart Association".]


There are various types of congenital heart defects. Those forms of the disease that are marked with an asterisk (*) are considered critical CHD.

  • Atrial septal defect.
  • Defect of atrioventricular septum.
  • Coarctation of the aorta *.
  • Doubling out of the right ventricle *.
  • Transposition of the great arteries *.
  • Ebstein's anomaly *.
  • Syndrome of a hypoplasia of the left parts of the heart *.
  • Aortic arch interruption *.
  • Atresia of the pulmonary trunk *.
  • Single ventricle *.
  • Tetrad Fallot *.
  • General abnormal pulmonary venous return *.
  • Atresia of the tricuspid valve *.
  • Common arterial trunk *.
  • Defect of interventricular septum.

The most common heart defect is atresia of the pulmonary valve and its stenosis, which leads to difficulty opening the heart valve. Similar data was obtained during a 2002 national survey in the USA.

The second most common case of CHD, according to the National Heart, Lung, and Blood Institute, is a complex defect known as Fallot's tetrad. In people with this disease, there is a hole in the heart between the ventricles, dextroposition of the aorta, right ventricular stenosis and hypertrophy. The last violation is caused by excessive blood pressure. \

The reasons

In European countries, congenital heart defects are diagnosed in about 0.8-1% of live newborns. In Poland, they are in second place among the causes of neonatal mortality immediately after perinatal diseases. In most cases (90%) the cause of congenital heart disease is unknown. The remaining part is associated with genetic defects and the influence of teratogenic factors.

Both single gene mutations and chromosomal abnormalities can affect the formation of defects. There are some genetic predispositions that are involved in the formation of chromosomal trisomy: Down syndrome, Patau syndrome, and Edwards syndrome. Congenital heart defects are also more common in children with other congenital syndromes, such as Turner, Noonan, Alajill, Marfan and Ehlers-Danlos, Hörler, Di George. Determined by CHD with imperfect osteogenesis and other disorders.

Congenital heart defects most often occur in newborns whose mothers during the first trimester of pregnancy suffered from certain viral diseases, especially rubella (in Latin Rubeolla). In such cases, arterial duct cleft and pulmonary stenosis can be formed. The use of certain drugs — hydantoin, lithium, thalidomide, vitamin A, or alcohol abuse — can lead to CHD.

Among other teratogenic factors that increase the risk, there is uncontrolled diabetes in the mother during pregnancy, systemic lupus erythematosus and epilepsy, especially when using special medications.

Video: Causes: congenital heart disease

Symptoms and Diagnosis

The clinical picture of congenital heart disease depends on the type and severity of a particular defect. Some defects may have minor manifestations. In other disorders in a child, the following symptoms are identified:

  • Blue nails or lips.
  • Increased or difficult breathing.
  • Fatigue during feeding or physical activity.
  • Drowsiness and apathy.

Diagnostic tests

The doctor first conducts a physical examination of the child. Next, perform instrumental research methods. Some CHDs can be diagnosed during pregnancy using a special type of ultrasound called fetal echocardiography. With its help, ultrasound images of the developing fetal heart are created.

Other forms of CHD are not detected until birth or immediately after the birth of a baby. In such cases, they may be identified at children's or even adulthood. If the doctor suspects the presence of CHD, then additional tests (for example, cardiography) may be assigned to the child, which allows for a more precise diagnosis.


Treatment of CHD depends on the type and severity of the defect present. Some affected babies and children may need one or more operations to restore the heart or blood vessels.

In other cases, treatment is carried out without surgery, but only using a procedure such as cardiac catheterization .During its execution, a long tube, called a catheter, is carried through the blood vessels to the heart, where the doctor can take measurements and make images or necessary tests, and also completely eliminate the problem.

Sometimes the heart defect can not be fully restored, then with the help of a minimally invasive procedure, the blood flow and the functioning of the heart are improved. It is important to note that even if the heart defect was restored, many people with CHD are not completely cured.

Answers to frequently asked questions

Are there accurate data on how many years people have lived with congenital heart disease?

With the expansion of medical care and treatment provided to infants, patients with CHD live longer and better. Many children with CHD were able to go into adulthood. It is estimated that over two million people in the United States live with CHD.

Survival statistics:

  • Survival of babies with CHD depends on how serious the defect is, when it is diagnosed, and how it is treated.
  • About 97% of children born with uncritical CHDs survive up to one year, while 95% of children born with uncritical CHDs survive up to 18 years.
  • About 75% of babies born with critical CHD survive to one year, while 69% of babies born with critical CHD survive to 18 years. Thus, the population of people with CHD is increasing.
  • Improved survival and medical care for children with critical CHD. Between 1979 and 1993, about 67% of infants with critical CHD survived to one year. About 83% of children with critical CHD between 1994 and 2005 were able to live to the same age. [3 - Matthew E. Oster, Kyung A. Lee. Temporal Trends in Survival Among Infants With Critical Congenital Heart Defects. Pediatrics, May 2013.]

There are the following options for the development of the UPU:

  1. Many people with uncomplicated forms of defects live without any problems.
  2. In other cases, the disease may develop over time.
  3. Some patients with CHD have genetic disorders or other health changes that increase the risk of disability or even death.

Even with improved treatment, many people with CHD are not completely cured, even if their heart defect has been restored. With CHD, other health problems may develop over time. It all depends on the specific heart defect of the patient, the magnitude of the violation and the severity of the pathology.

Against the background of CHD, even after treatment, various health problems can occur:

  • irregular heart rhythm (arrhythmias);
  • increased risk of infection of the heart muscle (infective endocarditis);
  • weakening of the heart due to the development of cardiomyopathy.

The presence of CHD forces to undergo regular examinations by a cardiologist, which allows you to maintain an acceptable level of health. It may also require reoperation at an older age, even after primary pediatric surgical interventions.

How long can you live with congenital heart disease after surgery?

If a childhood heart surgery was performed, it is necessary to monitor the state of health at any age. According to ACHA, adults with CHD can have health problems, such as abnormal heart rhythms, stroke, heart failure, and even premature cardiovascular death. The rates of hospitalization also tripled compared with other adults.

The hospital survival chart is based on the work of the German Heart Center in Berlin (DHZB).

Symptoms of CHD are easily overlooked because they are not specific. In particular, you can feel heart palpitations, have difficulty exercising or feel tired and short of breath. In this case, there is often a desire to “hide my head in the sand” instead of facing the problem of worsening cardiovascular disease.

It is important to remember that if you had to be born with congenital heart disease, then in an adult period of life you may need specialized help.

Possible risks associated with surgery for CHD:

  • Atrial septal defect - the risk does not exceed 0.5%, whereas in the absence of treatment of large defects, patients do not live more than 27-30 years.
  • The defect of the interventricular septum - the risk when performing an operation does not exceed 3%, although much depends on the size of the defect, the age of the patient and the functionality of the lungs.
  • Coarctation of the aorta - the risk of surgical treatment of about 1.5-2%, whereas without surgery, children with such a defect die in the first year of life in 75% of cases.
  • Fallot's tetrad - the risk of surgery is 3-6%, while about 30% of patients survive up to 10 years without treatment.

It is recommended to attend a cardiologist with specialized training for congenital heart defects at least once every few years and annually for more complex heart defects. But according to ACHA, less than 10% of people born with congenital heart defects actually receive the medical care they need in their adult life.

It is important to know that a specialist in CHD is not the same as an ordinary cardiologist, who may have had only six hours of training in the form of lectures on the CHD and without practical experience. In contrast, specialists in congenital heart defects in adults spend more than a year studying in this narrow direction.

Unfortunately, not everyone can travel long distances to visit a cardiologist specializing in CHD in adults. Similar specialists are mainly located in large cities. One of the ways out in such a situation is to send the results of diagnostic studies to a narrow-profile cardiologist by e-mail, while the local doctor, after consulting with a narrowly focused specialist, will be able to conduct better treatment.

Video: School of Health. Congenital heart defects

Source 1. Lozano, R (Dec 15, 2012). ""Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010."". Lancet 380 (9859): 2095–128 2. Canobbio, Mary M.; Warnes, Carole A.; Aboulhosn, Jamil; Connolly, Heidi M.; Khanna, Amber; Koos, Brian J.; Mital, Seema; Rose, Carl; Silversides, Candice (12 January 2017). ""Management of Pregnancy in Patients With Complex Congenital Heart Disease: A Scientific Statement for Healthcare Professionals From the American Heart Association"". 3. Matthew E. Oster, Kyung A. Lee. Temporal Trends in Survival Among Infants With Critical Congenital Heart Defects. Pediatrics, May 2013.

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