Diagnosing congenital heart disease early increases quality of life

Around 30,000 children with some type of heart malformation are born in Brazil each year, according to the Ministry of Health. This Friday (12), when National Congenital Heart Disease Awareness Day is celebratedthe coordinator of the Division of Child and Adolescent Cardiology at the National Institute of Cardiology (INC), Renata Mattos, highlights that access to diagnosis is increasing in the country.

“Here, in the Southeast Region, we have more access than in the North Region, for example. But, in general, we see that the diagnosis is being made and access to treatment is increasingly better”, assesses the pediatric cardiologist, who is a specialist in hemodynamics of congenital heart diseases.

Considered one of the main causes of infant mortality due to malformations, the condition requires early diagnosis and specialized monitoring to increase patients’ chances of survival and quality of life.

The global estimate is that around 1% of all children born alive will have some type of heart disease, of which 30% need attention in early childhood.

Renata Mattos explained to Brazil Agency that the name congenital heart disease encompasses several diseases, with different levels of severity.

“It’s any malformation in the child’s heart that happens when the baby is still forming inside the mother’s womb. So, the heart forms with some type of wrong structure.”

Fetal diagnosis

The pediatric cardiologist explains that, when the problem is detected within the mother’s belly, during pregnancy, it is possible that surgeries may be necessary to correct it in some cases. However, it is rare that there is an indication for this.

“In the vast majority of cases, when we make the diagnosis while still inside the womb, in the fetus, this is mainly for us to plan what the end of the pregnancy will be like, what the birth will be like.”

If, for example, a type of heart disease is detected that may require treatment as soon as the baby is born, this birth needs to take place in a place that has an ICU, so that surgery or catheterization can be performed. If it is a less serious illness, the mother can continue the pregnancy normally and have the birth as planned.

In some very serious illnesses, if there is no treatment in the first few days of life, the baby may not survive. Less serious heart diseases may present symptoms or some repercussions later.

Pay attention to the signs

When the baby is not diagnosed with a serious heart disease at birth, families should pay attention to some signs that may indicate heart problems.

During follow-up with the pediatrician, it is necessary to see if the child is growing and gaining weight within the expected curve for him.

“If it is very difficult to gain weight, you have to investigate whether it is something cardiac”, says the cardiologist.

It is also necessary to pay attention to the baby who cannot breastfeed, who breastfeeds little and gets tired or who has very rapid or tired breathing.

“These are warning signs for parents to seek cardiological care for their child.”

Another symptom, in the case of blood oxygenation problems, is the child turning purple, especially on the tip of the nose and lips.

Older children may report, for example, chest pain or a feeling of palpitation, which may be caused by an arrhythmia.

normal life

It is common for congenital heart defects to be resolved with a single procedure. But, in other cases, the patient has to undergo several surgeries in sequence, from birth to adulthood.

“When you diagnose correctly, the possibility of the person having a normal life is immense”, said Renata Mattos.

Professionals who treat these patients must be careful because, as they age, in addition to congenital heart disease, they begin to have “adult problems”, such as hypertension or high cholesterol. The doctor highlights that patients with heart disease are increasingly surviving, working and leading a normal life, with medical care.

“In the past, we thought that these children couldn’t do anything, couldn’t do any sports, and that’s not true. Nowadays, we even encourage these patients to exercise.”

Three surgeries

Nathan Senna Alves was diagnosed with severe congenital heart disease at birth. His aunt, who was a nurse, took him as a baby to the Pró Criança Cardiac institution, which has been treating children with this health problem for 30 years.

“Doctor Rosa [fundadora da instituição] welcomed me since I was born. I followed up completely and, at the age of 2, I had to have surgery for the first time. I have always been treated there. It was my second home, since I was born”, said Nathan Senna Alves, now 30 years old, to Brazil Agency.

At the age of 6 and 18, he underwent two more operations to replace heart valves. “I had the operation when I was 18, on my birthday, which is May 19th.”

Nathan is married, has a 12-year-old son and had no complications after the third surgery. He is currently undergoing treatment at the Piquet Carneiro Polyclinic, linked to the State University of Rio de Janeiro (Uerj).

Pediatric cardiologist Rosa Célia, creator of the project, told Brazil Agency that stories like Nathan’s show the importance of access to healthcare.

“When there is early diagnosis and access to appropriate treatment, congenital heart disease does not need to define the limits of a life.”

Over these three decades, the institution served more than 16 thousand children and adolescents and provided 130 thousand consultations, guaranteeing complete and free care for the families assisted.

Monitoring in the SUS

The Unified Health System (SUS) offers comprehensive monitoring for children with congenital heart disease, from prenatal echocardiograms to highly complex surgeries..

The main pillars of action and prevention in Brazil include:

• Fetal Echocardiogram: Test recommended by the Ministry of Health to be carried out between the 24th and 28th week of pregnancy to detect anomalies before birth;
• Little Heart Test (Pulse Oximetry): Mandatory neonatal screening carried out on newborns still in the maternity ward, between 24 and 48 hours of life, to identify critical heart diseases early.
• SUS Care Line: Diagnosed patients are referred to the specialized network, where they can receive clinical or surgical treatment fully paid for by the Unified Health System.