Four Children

I have been inundated this year by children with serious heart disease. Some of this heart disease is congenital and some acquired. The acquired cases are generally a result of rheumatic fever, a disease that we rarely see in the United States. Methode, the child with severe asthma and heart disease, was one of the children with acquired heart disease; however, I doubt that he has rheumatic heart disease.

 We discharged Methode today. We gave the family a referral to a cardiologist in Bujumbura, but I doubt that they will take him to the cardiologist. The cost of the consultation with the cardiologist plus the cardiac echo that he needs will be about $40. I don’t think his family can afford $40, but what if the family does have the means to take him to the cardiologist? What will then happen to Methode? I don’t know. I can’t conceive of it being anything good. He may have what is called a cardiomyopathy: a disease which weakens the heart muscles. If that is the case, there is no hope for him. His heart will progressively fail. But what if I am wrong? What if his heart disease is amenable to surgery? Can we not send him to Save a Child’s Heart (SACH) in Israel, like we did for the two other Burundian children, Clairia and Dainess? That is the problem I face.

I have already seen ten such children in the two weeks that I have been here. I saw another one today. Some of these children were previously diagnosed; some of them, I diagnosed because of their heart murmurs. I present below four of the children with heart disease. All four of these children had been previously evaluated by a cardiologist in Bujumbura. All four of them had cardiac echos. We know what’s wrong with their hearts. We know what must be done to fix their hearts. We know that their heart lesions are correctable with surgery. We know that all four of these children need surgery as soon as possible. Without that surgery, none of them will survive to adulthood, and one will die before she is ten.

The first of these four children is a two year old girl named Charnaute Mbabazi. She has Tetralogy of Fallot, the most common congenital, cyanotic heart disease. She is, in simplistic terms, a “blue baby.” The life expectancy of a child with uncorrected Tetralogy of Fallot is less than ten years, and many die before the age of five.

Charnaute’s oxygen level at rest is low, and even lower when she cries. She did a lot of crying when I examined her, so I saw how blue she became. The only picture I could get of her was asleep on her mother’s back. You see below the picture.

Her mother brought her into the clinic this past Sunday. I do not know why she chose to come Sunday, but she did. She gave me the information I needed. I do not need to speak Kurundi to understand what she was asking me to do: save her child’s life. I told her what I have told all the others: I will try.

The second child is a beautiful eleven year old girl, by the name of Marie-Joella Buntu. Here is her picture:

Marie-Joella, like Dainess, has rheumatic heart disease. She too has severe mitral valve damage, as well as a very dilated left ventricle and atrium. She needs surgical repair of her mitral valve. She, like Dainess, will have a normal heart if she has that surgery, but, without surgery, she will progressively develop heart failure. It is that heart failure that will prove fatal, probably before she reaches the age of twenty.

The third of these children is Ariella Kaneza, and she, like Marie-Joella, is an adorable 11 year old girl, as this picture demonstrates.

 Her story is the same as Dainess’s and Marie-Joella’s: she has rheumatic heart disease with a severely damaged mitral valve and a very dilated left ventricle. Her story is exactly the same as Marie-Joella’s. Heart failure will soon develop without surgery.

The last, and perhaps the saddest, of these four girls is a 16 year old girl named Foibe Ntitangakumwe. This is her picture.

     Foibe also has rheumatic heart disease, but, unlike the other two girls, she is already showing signs of heart failure. Her liver is enlarged, and she is short of breath after the most minimal of exercise. She is alarmingly thin. I fear for her, because time is so much against her. She needs surgery as soon as possible.

     I cannot explain the coincidence of these three children with rheumatic heart disease all being girls. Perhaps I relate more to their stories because I too have girls: two daughters and a 19 month old granddaughter. I love all of my girls to distraction; I love them beyond reason. Unbreakable are the ties that bind me to my girls. They know and I know that I would do anything for them.

I look at these three Burundian girls. I see their pictures. My heart goes out to them, perhaps because I am the father of girls. How would I feel if I was the father of any of these girls? How would I feel if my daughter or granddaughter was denied the chance to live? How would I feel if I could not save my child, when salvation was at hand in the form of an organization called SACH? How could I live with the futility of seeing my child go into heart failure because she could not have the surgery she needed?

I will never have to live with that impotence, nor will anyone who reads this. That’s because we all live in the United States, where children who need heart surgery have heart surgery. It is not a question of prioritizing for us.

There are approximately 16,000 heart surgeries performed on children in the United States every year. There have been, by contrast, two cardiac surgeries on children in the entire history of Burundi. Those two children came from this clinic.

Now I am faced with four such children; four children who are equally deserving of having this surgery; four children whose very existence depends on having the surgery. How do I decide whom I should put to the front of that surgical line? I don’t. That is not for me to say. All I will do, as I have said to the parents of all of these children, is that I will try for all of these children. I will make similar applications to SACH for all four children. It is then up to SACH to decide who will be the beneficiary of their altruistic services. I doubt that it will be all four, but I can only hope for the best.