Welcome to part 4 of our Malawi project visit. We left off at the part where I was sharing my personal story with Emilie, about my daughter Liesje. That’s when Emilie started pouring out hers, and Chisamo’s.
Emilie was chatty, and like most mothers, she’s a walking medical record. She explained that Chisamo had neurosurgery but it failed, and the surgeon said there is nothing more he could do for him, and another operation could make the situation even worse. Emilie didn’t seem to have taken the surgeon’s news to heart, still thinking that another surgery would fix the problem. Blessings was there as well, and he looked at me and said that Dr. Kamalo thinks the only way forward is palliative care, and that the surgery should be avoided, as it will most likely cause more damage.
I asked her if Chisamo’s head was still growing, and we were looking for a tape measure amongst us to see the head circumference. Emilie got hers, and measured Chisamo’s head, horizontally, right above the ears. It was 89 cm.
I then took Emilie’s hand, looked at her, and said: “Chisamo has suffered a lot of brain damage and surgery will not repair that damage. What is damaged does not recover. Surgery can eventually stop further growth of the head and prevent additional brain damage.”. Emilie was listening carefully, taking in the whole conversation. We explained that there is no good news, and that she can’t be given false hope for a cure. The care that she, the medical team, and supporting organizations need to provide is palliative care.
I asked her what the biggest issues are now, and Emilie said that Chisamo is sometimes in pain, the for the agony that can be heard in his crying, she has been trying reducing it with paracetamol, which helped, but she didn’t have anymore, nor ability to afford it. Unfortunately, the same goes for diapers. The financial situation of that poor family dictates who is going to have any care at any point, the financial situation is, the ruler of the palliative care that all 3 children of hers need to have.
She put Chisamo on her lap, she understood that he can’t be healed from his disability, but sometimes it’s important to hear what you already know, from other parties, and confirm it.
Nevertheless, Emilie and Chisamo are entitled to all care that is necessary and meaningful.
I asked Blessings if he knew of a good occupational therapist who can work with Emilie to find ways to improve Chisamo’s life and care. Perhaps he could even get into a sitting position with a support for the neck.
The final part of this 5-piece story you’ll be able to read on Sunday, and also, you will be able to download the story in a PDF format, with photos.
Don’t forget to support us, and to change the clock one hour backwards!
