An urgent plea

To Save a Child

I am writing this blog post in order to reach the greatest number of people in the shortest period of time. I chose this method rather than a mass e-mail, because I think it will be more effective. You will soon understand my urgency.

My first patient of the day was a five year old girl named Honorine Niyonkuru. She came with her mother from far away: an area called Nyanza-Lac. It is near the border of Tanzania, and it requires a two day journey to reach our clinic. She was brought into my office in her mother’s arms, for she had lost her ability to walk or even sit without support.

Her story is as follows: this was a completely normal five year old girl five months ago, with the usual energy and appetite and spirit of any five year old girl. It was then that she developed severe headaches that increased in frequency and intensity over the next four months. She lost all her energy and had difficulty walking. The mother took her to many doctors over this time, none of whom had an answer. Her symptoms continued to worsen; her headaches were now unremitting, and her balance was seriously compromised.

I was until today unaware that there is now a functioning CT in Bujumbura. It is located in the new hospital built by the Chinese. Honorine’s last doctor somehow got her a CT-scan at the hospital. The CT showed that she has a brain tumor. The CT diagnosis was a “pilocytic astrocytoma of the cerebellum with hydrocephalus formation”.

She returned to the doctor who ordered the CT. He saw the results, and said that there was nothing that he could do, that there was nothing anyone could do in all of Burundi. He told them to go home, and think about it; that if they could take the child abroad, that maybe someone could do something about it then.

The family did return home. That was one month ago. In that month, they have seen further deterioration of their once normal child. She is in more pain, and function is more seriously affected. There is no chance that they can take her abroad for treatment. They have, like their Burundian compatriots, very little money. I am sure whatever money they did have is gone for the treatment the child has undergone already.

The mother heard that there is a “white muganga” (doctor), who works at the clinic. It is why they made the two day trip to the clinic. We are their “dernier espoir” (last hope). They have come to the white doctor to see if he has the magic power to cure their critically ill daughter. I do not, nor does anyone here in Burundi have that power. That is why I appeal to you.

Before I get to that appeal, I should furnish you with some details. First of all, we do not even have a copy of the CT; we simply have a piece of paper with the reading of the film. We have requested the film itself, but that is far from an easy task in Burundi. We may never get it. However, there is no question in my mind that she has some form of brain tumor. Her symptoms and appearance could not possibly suggest otherwise. If it is the pilocytic astrocytoma that it has been diagnosed to be, then this is what we are dealing with:

Pilocytic astrocytoma or juvenile pilocytic astrocytoma or cystic cerebellar astrocytoma (and its variant juvenile pilomyxoid astrocytoma) is a neoplasm of the brain that occurs more often in children and young adults (in the first 20 years of life). They usually arise in the cerebellum, near the brainstem, hypothalamic region, or the optic chiasm, but they may occur in any area where astrocytes are present, including the cerebral hemispheres and the spinal cord. These tumors are usually slow growing. The neoplasms are associated with the formation of a single (or multiple) cyst(s), and can become very large.

The treatment of this tumor is surgical, and, unlike many brain tumors, this tumor may be curative. If not curative, the surgery allows for many years of normal function.

There is no possibility of surgery here. We know that, and we know, therefore, that Honorine is doomed by being born a Burundian. She cannot get the help she needs if she remains here. That is the basis for my appeal.

She has only one hope: the hope that she can somehow come to the United States for the surgery she needs. It is a virtually impossible hope. I even have to ask myself if it is a hope that I want to pursue. I question the ethics of my appeal. Let us say, on a theoretical basis, that somehow, some way, Honorine is brought to the U.S., and does have that surgery. Let us even say that the surgery is successful, that Honorine is cured, and lives a normal life after that. That is best case scenario.

I don’t even know if that is even a possibility, for the tumor may be too far advanced by now. However, now consider this question: is it fair, is it ethical to try to save one child when fifty or maybe even a hundred Burundian children can be saved for the same cost?

I have no answer to that question. I do know that when I saw that child today, and when I saw that mother, I could not refuse to help. I do not speak the language of this country, but I did not need any language to read the look in that mother’s eyes. It was a look of plaintive desperation. Please, doctor, save my child, it said. And who am I, as both a human being and as a pediatrician, to ignore the plea of a mother who has turned to me as her final hope? Am I to turn away? I cannot do that, even if the ethics of my choice are debatable.

I know better than anyone that the chances of success for my quest are negligible. But yet, I now launch my appeal. I turn to all of my friends and fellow doctors at Children’s Hospital to see if there is any possible way to make this happen. I appeal to all of my other friends to see what they can do. Is it possible to bring Honorine to Los Angeles for the surgery?

It would be an act of supreme heroism if Children’s Hospital of Los Angeles could find it in their heart and treasury to make the sacrifice required to do this. I am not hopeful, and I know that this is an “impossible dream.” Yet, I could not go to sleep tonight if I had not made the effort to make a dream come true, impossible as that dream may be. As Melino said to me today, a five year old child should be given “l’espoir a vivre” (the hope to live).

I cannot leave you without putting a human face to the patient for whom this appeal is launched. I want you to see for yourself the adorable, little girl that you will be trying to help. These are today’s pictures of Honorine and her mother in my office in Kigutu.