Acceptance

Honorine: Part 2:

A good friend of mine is a pediatrician by the name of Tanya Arora. Many of the people who read this blog know her, but, for those who don’t, I will tell you a little about her. Tanya, like me, did her pediatric training at Children’s Hospital of Los Angeles, and she too has spent time working in Africa. In fact, she has spent far more time than me. She spent six months in 2009-2010, working with Doctors Without Borders in the South Sudan.

I have profound admiration for Tanya because of her commitment to the cause of global health. She understands what it is like to work here. She knows as well as anyone the issues and the problems that we face here. She loves Africa as much as I do. That is why I turned to her for advice after I admitted Honorine to the hospital. I enclose below the e-mails we exchanged. Mine is first, followed by her reply.

We share a common experience. We both know what it is like here in Africa. Therefore, I can discuss this with you. I put up a blog post today about a little girl with a brain tumor. The tumor is, if we can believe the CT reading, surgically resectable. I made perhaps a presumptuous appeal to see if anything can be done. I know that we are swimming upstream. We both know that there are far greater problems here than one child with a brain tumor. I know that it is probably ethically wrong to even consider saving one child when so many more could be saved with the same money. But what I could say to that mother? I cannot help you or your child. Take her home, and let her suffer and die. Perhaps it is arrogance and hubris on my part to think that I can do anything. Perhaps I am too used to the American medical model of doing everything for everybody; that one should be able to say, enough. I do not know, Tanya, but perhaps you can and will let me know what you think. All I can say is that it is too ingrained in me not to try and help. Perhaps I should accept things as they are here, as one does so often.

I am so sorry - for this little girl, for her family, for you and for the state of health care there generally. But you are right in that you can’t do much. We don’t know what type of tumor it is, if she would need chemo, what type of surveillance would be required and rehab afterwards if she is left with disability. I had a similar child, but who presented at a later stage and I gave him decadron for palliation as he started to develop signs of increased ICP. There were so many kids that would have survived if they had just been here or just had slightly better care. So much of the reason why I will always want to go back is because I can’t get over that a beautiful healthy wonderful child died from diabetes. I didn’t bring him here because his life and his place was with his family and I wouldn’t be able to bring everyone here so how do you chose one child over another. These choices that we have to make there about who to treat and who to let go of are impossible and ethically will always keep me up at night. It does sometimes feel like playing god and now I know I never want that part of the job! But you have to do what is right for the child and their family in the given context. Doing no harm may mean doing nothing at all. The fact that you are there has changed the lives of so many children. While I know this one is tough, also focus on how many have survived because you are there and allow that to get you through this. My thoughts are with you. Sending lots of love, Tanya

Tanya refers in her e-mail to a child who died from diabetes. This is a previous e-mail from her about that child:

I have inherited a wonderful

patient, a 10 year old diabetic, whose parents haven’t been back to

pick him up for the past four months. They may come after harvest but

if they don’t show up by the time I leave I may have a stowaway! To

keep him busy he accompanies me on rounds picking up tons of English

and often making better decisions and contributions to the plan than

any of my medical assistants, transports patients to the operating

room, he helps with charting, he orients new patients to where the

bathrooms are – he is adorable and one of my favorite parts of the

day.

That was the child who died from diabetes. He died because he ran out of insulin. He died because he could not get back to the hospital for a month. He died because this is Africa, and that’s what happens in Africa. People die here because they do not have access to medical care; they die because they do not have access to medications that are universal in America. People die here that would be easily saved in America. Millions of people and millions of children die in Africa for that reason. The numbers are both staggering and incomprehensible.

The poignancy of Tanya’s regret is that she could not bring that ten year old diabetic home with her. He was, as so many here are, a beautiful and wonderful child. But how could she bring him? How could she choose to save one, and not the hundreds or maybe even thousands of others who similarly deserve to be saved?

Nor am I going to be able to bring Honorine home with me. Nor am I going to be able to save her. That is the awful and brutal truth. I wish with all of my heart that I could do something. But wishing is not going to change the inescapable fact that saving her is impossible.

I have just this evening made rounds in the hospital. I saw Honorine, and I saw a positive change in her. I cannot say for sure what has caused this change. Perhaps it is the steroids (Decadron) that I have been giving her. It may have reduced the swelling in her brain that often accompanies a brain tumor. Whatever the reason, she was clearly more comfortable. She smiled at me; she appeared happier. She even, as per the Burundian tradition, bumped fists with me. Her hand and arm were unsteady as she did so, because the tumor is located in the cerebellum, the part of the brain that controls equilibrium. But, even so, she successfully accomplished what probably was impossible for her three days ago.

I got at that moment a glimpse into the past. I saw the Honorine that existed prior to that tumor. I saw for myself the adorable and beautiful child beneath all that pain. I saw what her mother had before it all went wrong.

I made all the women on that ward, including Honorine’s mother, laugh this afternoon, with my picture-taking and my awkward attempts at speaking Kurundi. I got Honorine to smile: a shy, half-smile that lit up her face; it was a face that had been previously distorted by pain.

Those precious moments were bittersweet, for I know now that this may be the best that we can hope for with Honorine. A cure is out of the question. We have given her temporary relief. Perhaps we have even given her mother false hope that she will get better. I do not apologize for giving her that false hope, because her mother has, at least temporarily, recaptured some of the magic and the beauty that was her child. Part of me wanted to weep as I stood there, as I contemplated Honorine’s future. Yet part of me wanted to rejoice that I was able to bring back a little bit of joy into her life, as well as her mother’s life.

I have questioned myself in these past three days. I have asked myself if I should have publicized the fate of Honorine. Perhaps I acted hastily knowing the impossibility of my quest. Perhaps I should have known that neither myself nor anyone else could save Honorine. But I could no more stop myself from doing what I did that Monday than I can from stopping myself to think and feel. I know now that I can do no more. I have to accept Honorine’s fate, and that acceptance is at the base of much of what I do here. One does what one can with what one has.

My heart will break tomorrow, or perhaps the next day, when I send Honorine home. I am sure that most of you who read this blog will similarly have your hearts broken. In a sense, I feel badly that I have caused you such frustration and such unhappiness over the fate of a five year old child. Yet it is my hope that the story of Honorine will bring greater interest and commitment to the causes that I espouse here. I promise all of you who read this blog that there will come a time and an opportunity when you will be able to help the hundreds and maybe even thousands of Burundian children who so desperately need your help. Yes, one is lost today, but many can be saved in the future. It will be your efforts, your dedication, and your contributions that will save those children. Console yourselves with that thought even in the face of this tragedy.

I have enclosed at the end three pictures of Honorine, as she was today on the ward. You can see her faint smile. The last picture is my hand bumping fists with her little fist, as it is done in Burundi.