Yesterday I went to Mbabane again to help out at the Mbabane Government Hospital Eye Clinic. "Mondays in Mbabane". Anyway, I met with Sharon for awhile, planning some projects here in Swaziland, planning a meeting with the Ministry of Health, etc. It was productive, but I am learning there are a lot of road blocks to the progress I hope to make. More on that another day.
After meeting with Sharon, I went to help out the ophthalmologist at MGH, Dr. Msiska. One of the patients I saw in his clinic is a little three year old girl. She was wearing her little pink "winter" coat and had cute little pigtails. She came in with her father, who was holding on to her tightly. She was very well behaved and did not fuss at all when we examined her. The father spoke very little English.
She had the sweetest face, but the most obvious issue was her complete right sided ptosis (droopy eyelid). and her full-appearing orbit. Dr. Msiska said, "Well, the tumor must be growing." Excuse me?
It turns out, he met her over a month ago when her parents noticed "something wrong" with her right eye. She had an eye exam and a CT scan of her head. The exam and the CT scan were both concerning for retinoblastoma. The CT scan apparently showed an intraocular tumor with calcification and thickening of the optic nerve. So, with a working diagnosis of retinoblastoma, Dr. Msiska enucleated (surgically removed) her right eye one month ago.
She came into see us yesterday because last Friday (three days prior), she started having seizures. She had never had seizures before. This is concerning because it likely indicates intracranial spread of the tumor. (In the U.S. she would have already been started on systemic treatment for retinoblastoma, as dictated by an oncologist.)
Given the concern for intracranial spread, I asked if we could obtain an MRI. But, I quickly learned there is not an MRI in the entire country of Swaziland. It is a very small country (smaller than the size of New Jersey), with limited resources. So that was out.
Next, I asked the doctor what her current treatment regimen was. He stated that she needs to be sent to South Africa for further treatment, but they will not accept her as a patient until we have a formal tissue diagnosis. Because her eye had been enucleated and sent to the pathology lab over a month ago, I asked why we didn't have a formal diagnosis (again, likely retinoblastoma, but without pathology, a definitive diagnosis cannot be made). He said, "Well, the pathologist is ill." The only pathologist in the entire country. And I guess he is very ill and may not come back to work for quite awhile. So this child's eye has been sitting in formalin for a month, without a diagnosis, and therefore without treatment for retinoblastoma.
The doctor at University of Iowa who treats retinoblastoma cases always insists that children with suspected retinoblastoma be seen immediately. As in, the same day if possible. And the treatment begins immediately. There are very few true "ophthalmic emergencies", but this could be considered one of them. Or maybe it could be considered a case of "ophthalmic urgency". At any rate, this poor child's (likely) retinoblastoma has been growing/spreading for the past month.
Dr. Msiska did say there is a private pathology laboratory in Mbabane (I think they mail things out to be read overseas). He suggested the father take the eye there. Unfortunately the cost is prohibitively expensive for this family (1000 Emalengeni or about $100). So... he couldn't secure the funds. (Typical daily wage here is 50 Emalengeni, or about $5). And furthermore, I asked the doctor how the pathologist would receive the specimen. Apparently the father would have had to hand-deliver the eye to the lab himself. I cannot imagine having a child with probable cancer, who has now lost his or her eye, and having to carry the specimen myself to the lab.
So what did I do? I did the only thing I could think of: I called Jono :) Jono to the rescue. I explained the complex situation. He said, "This is an emergency. This child will die from this disease." He heard the desperation in my voice and knew that I wanted to bring the eye back to Siteki with me so that we could send it for pathology read in the UK. Jono said, "Absolutely. I will pay for it." I told him I was happy to pay for it too (it doesn't solve the 'systems' problem, but will help one child). So, we will mail the eye out to the UK, get a pathology read and diagnosis, and then the child can be referred to South Africa for treatment.
Meanwhile, Dr. Msiska mentioned there was yet another child on the eye ward with likely retinoblastoma. He said he usually sees about 3-4 cases/year, but he has had two in the past month. The two year old boy was to have his eye enucleated today. So Jono and I told Dr. Msiska to send that eye to Siteki, and we will send it to the UK as well.
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| Poor red reflex (right eye), concerning for retinoblastoma. |
I don't want this post to sound like a criticism of Swaziland. It isn't. I am just trying to make others aware of systems issues here in Swaziland. These issues are especially apparent in a country as small as Swaziland. It is a domino effect: the pathologist gets sick, so a tissue diagnosis cannot be made, so the child cannot be referred for treatment. There is no "escape" route (such as a second pathologist to read the specimen, or a way to send it to a South African pathologist).
We Americans must also remember: America has plenty of its own problems. And many of them relate to healthcare and access to healthcare as well. So it isn't just a problem here in Africa.
I did learn from this patient that "love is love". And this father, although he may not understand all the things the doctors are saying, he may not speak English, and he may not understand the complexity of his daughter's illness...he loves her just the same and wants the best for her. I could see in his eyes how deeply he loves her. So Jono and I must help, however we can.
Any of my pathology friends looking for a job in, oh say, Swaziland?!
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