Stories for World AIDS Day: Faith's Birthday

Every World AIDS Day, I write about Faith. If you have read my words about Faith before, I hope you will forgive the repetition. But surely an important part of commemorating something like a World AIDS Day is to remember.  And I remember Faith on every December 1st. I woke up thinking about her.

December 1 was Faith's birthday. Faith would have turned 12 on this World AIDS Day of 2012. I can imagine all of the things that might have made Faith excited today - her friends, her classes in school, the special meal her mother would have prepared as a birthday celebration.

Faith

Faith was the first child that I saw die from HIV. It was the fall of 2004, and I was working on the wards of the referral hospital in western Kenya for the first time. I was rounding with the intern on the wards, reviewing all of the children who had been admitted to the hospital overnight. And there, on one of the rusting, metal-framed single beds on the crowded, open ward, sat Faith and her mother.  Faith was 4 years old, and she only weighed 4 kilograms - about 9 pounds. I had never seen such a thing before - a 4-year-old child so tiny and skeletal that she weighed only as much as some newborn babies. Four-year-olds are usually my favorites. They are full of imagination and spirit, confident in their new skills, and eager to tell you all about what makes them excited. Four-year-olds are not supposed to look like Faith looked.

As my hands ran over her swollen lymph nodes and her wasted body, as I saw the thrush in her mouth and the rashes on her skin, I knew that Faith had HIV. Already, my time on the wards in Kenya had taught me what HIV looks like in children. I still sent off Faith's blood test, of course, and it came back positive. In my entire two months on the Kenyan wards during that first visit, out of the many, many tests we sent to the lab, I only had one test for HIV come back negative. So many positives.

Faith's mother had worked very, very hard to get her daughter to the referral hospital. Faith had been sick many times -- with bad pneumonias, with continual diarrhea, with rashes covering her body -- and Faith's mother knew she needed something more than what her village health clinic could provide to make her daughter healthy. She hoped that the referral hospital would be the place to find what was needed. And she scraped together every bit of money she could raise from her extended family in order to make the long trip to the referral hospital and to have something to put towards the steep cost of the hospital bill.

I used to take photos of the children on the wards for their families and then print them out for their parents. This was an extremely popular activity on the wards, and I suspect my gifts of photos garnered me much more enthusiasm with the families than my doctoring of their sick children. Faith's mother wanted their picture taken next to an isolette, the one modern-looking incubator for tiny babies that we happened to have on the wards. Never mind that this isolette actually did not work, it was the most advanced-looking piece of equipment we had on the wards, and she posed proudly next to it. In this photo, Faith looks too sick, too weak to match her mother's enthusiasm.

Faith died two days after she was admitted to the hospital. Our medicines, our fluids, our nutritional support were all too little, too late. We could not save her. This early loss of mine still brings tears to my eyes. Faith taught me my first real lesson in how HIV takes away children's lives.

After Faith died, her mother kept thanking me for the photo that I had taken of Faith. She did not have any other photos of her daughter, and she was grateful to have this one. I felt terrible when she thanked me, hollow and sad. I felt like I failed her because I could not keep Faith alive. What was a photo in the face of the loss of a 4-year-old daughter?

In hindsight, with more deaths marking my heart, I can tell my old self that I did not do so bad with Faith. I kept her comfortable and kept her mother at her side. I did the best I could with the medicines we had. I gave Faith stickers that made her smile. I left her family with something by which to remember her.

But I still wish that Faith was alive today. I wish that she was marking her 11th birthday with joy and celebration. I wish that we knew what kind of beautiful girl this 4-year-old would have blossomed into.

There are 2.3 million children living right now, on this December 1, with this same virus in their blood. 2.3 million children who will not be able to celebrate all the birthdays they should if they do not receive the medicines to fight HIV. Only half of those children have access to those medicines right now.

We could have kept Faith alive if she had been able to enroll in our HIV clinics and start the medicines for HIV before she got so sick. We could have given her many more birthdays. On this December 1st in Kenya, we have 7,000 Faiths alive and growing and taking these medicines through our clinics. On this December 1st, our clinics have seen 24,500 children who have been exposed to HIV or who are infected HIV. On this December 1st, I raise my voice for access to care - for access to medicines and access to healthcare systems - for the 2.3 million children who are living with this virus. I remember Faith, and I pray and strive towards the access to HIV care that will allow for more birthdays.

Posted at 05:13

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