Interviews
Dr. Acelia Betancourt Pérez,
Intermediate Care Ward Chief, “William Soler” Pediatric Teaching Hospital, Children’s Heart Center

MEDICC Review (MR) visited the Children’s Heart Center in Havana this month, speaking with members of the staff, patients and their families, medical students and residents in training. In addition to the following interview with Dr. Acelia Betancourt Pérez (ABP)- one of Cuba’s top specialists in pediatric cardiology, medical professor at the prestigious Higher Institute of Medical Sciences and member of the faculty of one of Havana’s nine medical schools - we participated in grand rounds on one of the wards (see Conversation: Grand Rounds on the Intermediate Care Ward of the Children’s Heart Center).

Dr. Acelia Betancourt oversees the main pre- and post- operative ward at the Children’s Heart Center where patients are hospitalized for diagnosis as well as for treatment before, after or in lieu of surgery. She supervises residents-in-training and also the clinical rotations of medical students. Dr. Betancourt has been a practicing physician for over 30 years and a pediatric cardiologist for 24 years.

MR: Perhaps we should begin by asking you about your history, your story.

ABP: I am from Holguín. I graduated from Medical School over 30 years ago. I studied at the University in Oriente, in Santiago de Cuba. I did post-graduate work in Matanzas Province and later I moved to Havana where I sub-specialized at the Institute of Cardiology. So I’ve been a specialist in pediatric cardiology for some 24 years. After completing my training in Havana, I went back to Holguín where I founded the first pediatric cardiology service in that part of the country. I worked there for 10 years. When the Children’s Heart Center was founded here in Havana, I began to think about wanting to study more, to work towards a second level specialization. So I came here in 1990 and I’ve been here ever since.

In Cuba we have different levels of specialization. A physician first specializes or does a residency in a given area and upon completion receives the title of first level specialist (or “Especialista de Primer Grado”), but one can also continue and aspire to higher levels in medicine in Cuba. To achieve the next level (or “Especialista de 2ndo Grado”) further study is involved, additional academic requirements, research, a certain number of years of practice/experience behind you and then there is also the requirement of having published or made other such contributions to the field. So I am a 2nd level specialist and in addition to that training I also fulfilled the requirements for a teaching position. I am a professor of medicine, of pediatrics - pediatric cardiology specifically.

MR : And you continue to work, to practice medicine and to teach full time?

ABP: Oh yes! It’s my reason for being, I live for my work! I receive energy from my work, and I receive great rewards – a child’s smile, a parent’s gratitude. I love what I do and it is truly rewarding.

MR: Could you talk some about this Center?

ABP: The Children’s Heart Center was founded in 1986. This is the National Reference Center for Pediatric Cardiology and the central coordinating institution for the rest of the country. This is where most major pediatric heart surgery is done and the national Children’s Heart Network is coordinated from here. For details of this network, see Spotlight: Treating Children with Congenital Heart Problems: It Takes a Network . We have a National Pediatric Cardiology Network whereby every provincial capital has a chief coordinating pediatric cardiologist. This person inter-consults with, organizes and coordinates with all of the municipal cardiologists. The major provincial pediatric hospital receives children from different parts of the province for more specialized attention as required, and for remission to Havana if necessary.

MR: So these services are integrated and coordinated at all levels of the system, then? And the attention, the “treatment” involves the family? Family members can be with the child?

ABP: Yes, in fact it’s required. Children are always hospitalized in Cuba with an accompanying parent. And yes, it’s an integrated approach and a multi-level approach. Also, it’s completely free of charge.

MR: So this Heart Center provides services nationally – it’s services are available and accessible to people from all over Cuba?

ABP: Yes, it’s national. But really it’s also an international institution. We’ve provided services internationally as well. I mean, we are receiving children regularly from Venezuela now. One of our doctors, Dr. Carballe, travels to Venezuela and classifies the patients there and is involved, with others, in selecting those children who would benefit from surgery here in Cuba. We receive these children with a family member – they stay in a little hotel we have connected to the hospital – and we do the work-up and determine how to proceed. We do the surgery here and after a period of recuperation, they go back to their country.

MR: Are the Venezuelan children the only ones that come here from abroad?

ABP: No. Just last week, in fact, an Angolan boy, Gildo Leopoldino Miguel, was hospitalized here with a congenital heart condition, a Ventricular Septal Defect (VSD). He was a very sick baby, but we were able to manage his condition and now he’s doing very well, he’s just fine! He’s here this morning and he’s happy, healthy – fully recuperated. He’s going back to Angola tomorrow.

We also have had children here from Nicaragua, Peru, Bolivia and other Latin American countries.

MR: What are the ages of the children here, generally?

ABP: We receive children here of all ages…even newborn infants. In fact, you could say we have some patients who are receiving pre-natal attention, children with congenital heart disease diagnosed in utero. We do fetal echocardiography and we are the main coordinating institution for pre-natal diagnosis of cardiovascular congenital malformations. There is a National Program for the Detection of Congenital Malformations and so there is a close working relationship between this Center and the National Genetics Center at the “Ramon González Coro” Maternity Hospital. We work together, our cardiologists inter-consult and coordinate regularly with the Obstetricians and Neonatologists. Once a diagnosis is established, once a congenital malformation is detected, then the whole situation is explained to the couple – this is an ethical issue for us. We give as much information as possible and our assessment of the probabilities in terms of whether the child can live or not, what the possible treatments or cures are or are not, what the different possible outcomes might be. Then the couple decides what to do. All of this needs to take place prior to the 28 th week of the pregnancy because after that the fetus is considered viable and then it would be unethical to interrupt the pregnancy because of even a severe congenital heart condition.

MR: Are there other aspects of prenatal care that have to do with the early detection of heart disease?

ABP: In addition to special attention and monitoring for high-risk women and babies, there is the General Early Detection Program that covers all pregnant women. This relates to all types of possible conditions. If a cardiac malformation is suspected, then we cardiologists become involved. When we are able to diagnose a condition before birth, like a Ventricular Septal Defect (VSD), for example, then we are ready. This isn’t necessarily such a complex condition, this would not be a pregnancy that would be interrupted, but the cardiologist would be called in. Immediately from the moment of birth onward, the child receives specialized attention and a strategy is developed, treatment plans are made. Every case is different. The need for surgery depends on many things and we prefer to try to put off surgery until the baby is at least 6 months old if possible. But if intervention is needed immediately then we can do that, and we do: hours after birth or days sometimes.

MR: Are many lives saved?

ABP: Yes, many lives are saved. In fact, we have a very high rate of survival even in the case of some of the major, most serious conditions.

MR: What is the incidence of cardiovascular disease in children?

ABP: Internationally the incidence is about 8-10 per 1000 live births and in Cuba it’s more or less the same. Of these, probably about 50% or half are in critical condition at birth – we’re talking about serious cardiovascular disease requiring immediate/early intervention. That is, if the child’s life is going to be saved, then that first month of life is key. This is why the Children’s Heart Center is so important – lives are saved…many lives of infants less than a year old are saved.

MR: Cuba’s infant mortality indicators are impressive (see Top Story: Cuba Hits Record Low in Infant Mortality) and in general the health indicators are comparable to the so-called “first world” or developed/industrialized nations. Is this the case in this field as well? Are your results similar to the results in those countries?

ABP: No, not so much the results. We cannot do as much and our outcomes aren’t as good. We are up against the impact of the US blockade. It limits our possibilities in a number of ways: we don’t always have the resources we need, the technical resources, equipment, medication. We have the necessary knowledge, our physicians are capable and we could learn the newer, more modern techniques and apply the latest protocols, but we don’t always have access.

MR: For example, there was the study that found that there were particular problems with prostaglandins [Denial of Food and Medicine: The Impact of the U.S. Embargo on Health and Nutrition in Cuba; http://www.ahtc.org/Denial.html.

ABP: Yes, because this drug is indispensable in the treatment of certain conditions. It’s a very costly product and there are great obstacles to acquiring it for Cuba.

MR: You are not a surgeon, you are the pediatrician and cardiologist in charge of this ward, correct? Can you tell us something about it?

ABP: This ward functions as an intermediate care ward. We have children here ranging in age from a year to 18 years, basically. But sometimes we even have adults as patients, and also infants less than a year old.

MR: Is there one particular case that you recall that had a special or significant impact on you – one that you’ll never forget?

ABP: The most moving and emotional case in my history was a little girl named Heily Gutierrez. I first saw her when she was less than a month old. She had a Complete Transposition of the Great Arteries and VSD (Ventricular Septal Defect) as well. Her situation was very, very serious. It was a long and grueling process with her. She kept almost not making it. She had at least 6 major surgical interventions in a period of months. It was very difficult. These cases are very delicate, very tricky. But she made it. Once they go home, we visit them – regularly. I am part of Heily’s family now!

MR: Is there a multi-disciplinary team here?

ABP: We have psychologists that work with the families, that visit the families and also work with the children when they’re older. We have different people involved in pre- and post-surgical attention, physical therapists, technicians, teachers, nurses and doctors. We do long term follow-up as well. I would say it’s multi-disciplinary and integrative.

MR: Did you want to add anything else, talk about anything else? Please feel free to do so.

ABP: The world is a very difficult place right now, very difficult. But I feel happy to be Cuban. I feel that it is a privilege and an honor to be Cuban. Besides, I’ve had the opportunity, because I’m Cuban, to visit a number of different countries. I’ve been to France, Italy, Spain, Yemen, Mexico, Peru. I appreciate the way we work here and what we have to work with in terms of people, our knowledge, our integrated and multi-disciplinary approach. We know we make a difference, we feel and know we have an impact. We save the lives of children and we alleviate the anguish of families.