Alinafe

I first met alinafe in april on a home visit that we hadn’t even planned on doing. How it happened was a miracle in itself. at first it was no different than any other, but it soon became an experience that will never leave me. we were Bumping around in the back of the mnibus travelling on roads that are little more than walking tracks. The maize was tall, green and thick making the usual crazy search for houses and villages even more problematic. We had just finished delivering equipment to a little boy with hydroceph, when a young man flagged down the car and offered to give us directions to alinafe’s house who he presumed we were here to see. We also presumed the same, unaware that alinafe was not on our home visit list for that day, and not on our current caseload. Thankfully we never checked our list to discover this until the next day. Alinafe would not be alive today if we did. We later discovered that she hadn’t been seen by us at sos for nearly 4 years. We had lost contact with them as they had moved and no longer brought alinafe in for treatment. We soon found out why.

Dawn, Victor and I all walked along happily chatting while slowly weaving through the many chickens and pigs before reaching the house. Titi and Wesley were already inside but soon came out with looks of shock and anger like I have never seen from them before. Titi was clearly furious declaring “it’s a disgrace, its negligence, where is this childs mother?”. Wesley was to overwhelmed to speak.

I was a little nervous going inside. I guess, worried about what I would see. At first I saw nothing. The tiny tiny two room house had dirt as walls and floor with a grass thatched roof. It was empty. But that’s not uncommon. The smell was terrible. But also not uncommon. It was her eyes that I could see first. Then her teeth as she bared them in a giant smile and let out a little giggle. As my eyes adjusted to the light we found her naked, shivering, lying in the dirt and what had become her own little toilet.

From then onwards everything was a bit of a blur. All sorts of things were happening around us. The guys took charge, wrapped her in a chitenji and carried her outside. Seeing her in the sunlight was even more of a shock. Her skin looked like a blanket that had been thrown over her bones. There were folds of skin stuck together where tissue and muscles must have once been. She was ridiculously pale, and responded to the sun like she hadn’t ever seen it before. The dirt was caked on, her head was covered in lice which she frantically itched and flies surrounded her. But she smiled. Especially when you looked at her, when you talked to her and when you touched her. So that’s what dawn and I did. By this time a large crowd had gathered and the guys were all talking and arguing with various people. Home visits usually take about half an hour or so. but we spent the whole afternoon. It took a long time to find the mother, who was eventually located out in the field. Alinafe hadn’t been fed, or washed in what seemed like forever. Her last doctors visit was nearly 3 years earlier, since that time she had not been given the prescribed elipsy meds, so had continued to have seizures untreated. She had been deliberately neglected. This sort of neglect of children with disabilities happens a lot. Alinafe is 11 years old. And she looks about 6. she is chronically malnourished
She has cerebal paulsy. Her functional abilities are so much worse than they would be if properly nourished. She is one of the most beautiful girls I have ever seen. I cant look into her eyes anymore without tears. I cant understand why anyone would ever be able to do this to a child.

As a team we washed her. It is a moment in my life that I will never forget. Ever.

There were lengthy chats with the mother. It was obvious she had been severely neglecting this child but she promised to improve her ways. But we all had a bad feeling. Plans were made for doctors visits. Transport was organized for alinafe to attend our clinic once a week. We made a return visit the following day to deliver food supplies. Alinafe’s mother had her sitting outside, had shaved off the lice and alinafe looked clean. We thought she would be ok. She only came back once. But the story doesn’t end there.

For such a long time, alinafe was all we could talk about. We all agreed it was a miracle that we went to see her that day. without that visit she wouldn’t be alive today. Translated Alinafe means God is with us. We certainly believed it! Since that first meeting, I think about her a great deal. As a team we often spoke of her. We often discuss how we can reach more children suffering the same negligence. We have debated the questions of why does God let bad things happen? What is the purpose for alinafe’s life? are we just prolonging her suffering? How can we impact the cultural restrictions of taking action? What can we do? what is our response? Alinafe has broken our hearts and has been a catalyst for change in our lives and in our work.

Just a few weeks ago, we returned to the home for a repeat visit, worried by what we would find. Titi, Lameck, Loz and myself all went to find alinafe in a state no better than our first visit. she had made little improvements, and again the mother was no where to be found. Although this time we did not find the same smiling alinafe, and she had large red and swellen lower legs. I attempted to feed her and observed as her mother did the same. It failed miserably. Everything spilled from her mouth. She was so weak and deconditioned that swallowing just wasn’t an option. The guys called a spontaneous community meeting and the chief, village headman, relatives and some women olunteering to help with alinafe were all called together. A plan was made to supervise the care of alinafe, in the absence of the mothers attempts to do so. during this meeting the mother admitted that she wanted alinafe dead so that she would be free of the burden. Other than that she sat silently, showing no love or affection to alinafe and very little remorse. It was heartbreaking.

We escorted alinafe to the hospital and waited to ensure they were admitted and the mother didn’t do a runner. Alinafe weighed in at 8kg, she was treated for a chest infection, septicemia and malnutrition during her inpatient stay. The HIV test was negative. On discharge she had greatly improved and was able to start eating again. we gave her blankets, dresses, and food. We have since discovered that the blanket is being used by the mother, the dresses were sold and alinafe received no food. The mother is not even hiding the fact that she wants her child dead anymore.

We have just had workshops this week, and the four volunteers (including the chief) have all taken a liking to the beautiful Alinafe, they are loving her, bringing her to therapy and checking up on her every day. However, there is no assurance that these volunteers will commit to anything long term. There are also no assurance that Alinafe will survive. There is no child protection services, there is no support care program that can save her from what is happening.

Each husband that comes along demands Alinafes mum to choose between them and the child. If she doesn’t they leave her. Now the mum thinks Alinafe is a curse and until she dies the curse will not be lifted. I hate those husbands. I hate that I feel that way. But I do. I am so angry and so confused and so helpless. We all are. Its not like Australia. There isn’t as many options of how we can help. Some of our actions will increase her chance of being abandoned. We have discussed this at length. She may die anyway. Does that change how we respond to what we see?? Is what we are doing enough?? Are we just prolonging her suffering? She deserves a chance though. she deserves so much more.

This is happening to so many children across the world, in Malawi, in Lilongwe, in natenji village. But we can’t find them all. we can’t fix them all. But we CAN love her. She is so desperate to be loved. Sometimes it hurts so much when I look at her. I don’t know how to describe it any better. You can’t look at this photo and not see something in her eyes. Doesn’t it warm your heart to see her smile, and yet break it to imagine what it would be like to live her life. With a mother so desperately wanting her to be dead. How little we know about real suffering. How sheltered we are. How blessed we are.

I am struggling to process all of this right now.