Spotlight
Treating Children
with Congenital Heart Problems:
It Takes a Network

Incidence of congenital cardiopathies in Cuba is 6 X 1,000 live births, which at current birth rates, means approximately 900 infants are born each year with congenital heart problems; 30% of those are under one year and require surgery or catheterization. (1)

In 1986, the Cuban health system adopted the National Program for Care of Children with Cardiopathies, in order to facilitate integrated management of these cases nationally. The Program itself is subordinated to the Maternal-Child Division of the Ministry of Public Health, and is guided by the following objectives:

• Reduce infant mortality from cardiopathies, and improve the quality of life of children born with congenital heart problems.
• At the national level, offer heart surgery when indicated, to children with cardiovascular malformations.
• Prevent these pathologies where possible.
• Provide rehabilitation, especially post-operative.
• Facilitate collaboration among institutions related to this health problem.
• Develop the National Children’s Heart Network.

In 1986, one of the first steps in the program established the Children’s Heart Center at the William Soler Pediatric Teaching Hospital in Havana, as the national reference center for the program. (See MR Interview with Dr. Acelia Betancourt Perez, this issue). The work of the Center since then has concentrated on:

• Diagnosis and surgical treatment of congenital cardiopathies, with emphasis on the most vulnerable: newborns, infants under one year, and complex cardiopathies.
• Interventionist catheterization.
• Cardiovascular rehabilitation.
• Management of arrhythmias.
• Cardiogenetic studies.
• Teaching and research.
• Training and continuing education for specialized personnel in the National Children’s Heart Network.

Since its founding, the team at the Center has performed over 6,000 surgeries, 30% of these in newborns and infants under one year of age, plus over 1,000 interventionist catheterizations, in collaboration with international specialists who have also provided their expertise to Center specialists.

The following results have been achieved to date:

• Reduction of infant mortality due to congenital cardiopathies from 3.3 X 1,000 live births in 1980 to 0.8 X 1,000 live births in 2002-2003. Similar reductions in mortality related to cardiopathies can also be observed in other pediatric age groups. (1)
• Since 1992, the cardiovascular rehabilitation program has continued to develop, providing follow-up for over 2,000 of the patients who received surgery at the Heart Center, and reaching children throughout the provinces via the National Children’s Heart Network. (1)
• Of particular importance is the post-graduate training of specialists through programs directed by the Center, which have attracted participation from top-level specialists abroad. In 2003, Pediatric Cardiology was approved as a field of specialization by the Ministry of Public Health.
• Research has prioritized study of the incidence, prevalence and morbidity within the universe of patients identified, adopting a social medicine approach to the investigations. Genetic studies, prevention and rehabilitation are particularly important themes for the Center.
• The Center has collaborated with other Heart Centers in the country, which offer specialized care for children over six years of age who present less complex cardiopathies.

The National Children’s Heart Network

Dr. Eugenio Selman-Housein, who directs the Children’s Heart Center in Havana, notes that its function at the hub of the National Children’s Heart Network is critical to diagnosis, treatment and follow-up for these young patients. “The national network brings them specialized attention where they live,” he says, “and also provides guidance for local pediatricians, family doctors and nurses, parents and family members.”

The Network includes both secondary level institutions (pediatric hospitals, maternity hospitals and neonatology services) as well as primary care facilities (community polyclinics and family doctor-and-nurse offices at the neighborhood level). In each of Cuba’s 14 provinces and on the Isle of Youth, one cardiologist is charged with coordinating the Network’s activities in their territory, and coordinating these with the National Heart Center in Havana.

Thus, the Network performs the following functions:

• Diagnosis and referral of patients, according to the gravity of their cardiopathy, prioritizing the most vulnerable groups.
• Follow-up for patients who have received surgery and those who have not, emphasizing comprehensive management (attention to cardiological care, growth and development, nutrition, immunization, etc.) and social integration (in school, later in work, during pregnancies of women patients).
• Genetic counseling to parents in the Provincial and National Genetic Counseling Centers. This is also a responsibility of the pediatric cardiologist and family physician. (For more, see article this issue: More Graduates for Genetics Counseling Master’s Degree).
• Nationwide, prenatal diagnosis is carried out via echocardiogram at 20 weeks for all pregnant women. When a cardiopathy is diagnosed in the fetus, a team of specialists in pediatric cardiology, obstetrics-gynecology and genetics meet with the parents to inform them about the nature of the pathology and prognosis (both with and without surgery). Parents decide to carry through or interrupt the pregnancy. If they decide to continue, then conditions are prepared to give specialized care to the newborn immediately after birth.
• The program for prophylaxis and control of rheumatic fever and rheumatic cardiopathies has noted positive results, considerably reducing the most serious forms of carditis and eliminating deaths from this cause among pediatric patients.
• Priority has been given to early identification and follow-up of coronary risk factors for preventive cardiology in children and adolescents. Dislipidemia, high blood pressure, level of physical activity, obesity, diabetes and smoking are among the factors targeted by pediatric cardiologists, pediatricians and primary care physicians in the context of family and community health.
• As mentioned above, the Cardiovascular Rehabilitation Program for children is carried out in each province, with specialized personnel and equipment at pediatric hospitals and polyclinics.
• Training and post-graduate education for professionals staffing the Network (cardiologists, pediatricians, neonatologists, intensive care specialists, ecocardiographers, physical therapists, nurses, health technicians, social workers, etc.) is carried out through semester-long diploma courses, short courses, workshops, national and international fellowships and scientific symposia, and annual meetings of the Network itself. Such continued training plays a fundamental role in the activities of the Network. Local and provincial programs are also periodically assessed by national teams of specialists.
• A national computer network is now being set up to connect all the provinces to the Children’s Heart Center in Havana, facilitating consultation among specialists on specific cases and general scientific exchange and information.
  
  
• The social and community-based care offered at the primary level constitute the fundamental pillar of the National Network.

Dr. Selman-Housein makes a final observation: “Just as important as the reduction in infant mortality achieved by the Center and the Network,” he says, “is the social impact of these services, which translates into greater security and confidence for families with children suffering from cardiovascular conditions.”

References

(1) Data from the Children’s Heart Center, William Soler Pediatric Teaching Hospital, Havana, December, 2004.

* All photos, Children's Heart Center, Havana.