Wednesday, September 26, 2007

Two Patient Stories

I'm particularly drawn to two regular patients at the clinic; we'll call them Jose and Carlos. We see both these babies often, including today, and I'd like to share their stories with you:

Jose is six-months old and weighs 8 pounds today. Last week when I weighed him he was 9 pounds, and the week before that he weighed 10 pounds - his caregiver told me today that he won't eat. Jose's HIV-positive mother abandoned him as a newborn, and he was taken in by an elderly neighbor woman and an uncle who are both very dedicated to his care. As a newborn, Jose was hospitalized five times in as many months before the public hospital referred him to our clinic. Fortunately, we can provide care (and some baby formula) to the family free of charge. Unfortunately, we don't have a big lab and cannot provide many of the complicated tests the baby needs, which means more expense for the family and lots of lost time waiting for results. We can't even do an HIV test, since the more affordable test we have would detect the mother's antibodies in the baby's system and be an automatic positive, no matter Jose's real status. Jose can't sit-up or grasp objects; he breathes poorly and his skin is covered in old and newer scabies scars. But he is alert, makes strong eye-contact, and loves to visually track moving objects. And he has the most wonderful, rare smile (that he usually reserves for his uncle). Holding this serious, tiny baby is unlike anything I've ever done before; my heart breaks for him. Jose is very, very ill. His failure to thrive is possibly due to a positive HIV status, but we can't start treatment until we get two separate, positive results of the expensive, out-sourced test - weeks of waiting. Today, we decided to put him in the hospital for a few days of IV nutrition. Please keep him in your thoughts and prayers - this baby needs all the help he can get.

Carlos is doing only a little better than Jose. At nine-months he weighs in at 14 pounds. His quiet, timid mother weighs 94 pounds (three pounds less than two days ago). She is HIV-positive, but Carlos has definitively tested negative, to everyone's relief. So why is Carlos' growth plateauing? He is a social and engaging child, with a sweet, elfin face and a quick smile. His mother says he eats a lot (rice, beans and even some meat, but almost no milk, which is too expensive and which we can't provide on the donor-program's technicality that Carlos is not HIV+). Mom hesitates to answer our questions; even when Elena, (with her open, non-judgmental, trustworthy, and caring manner) reaches out to her and gently explains how important it is for the baby to eat, and for Mom to eat, too. When Elena asks how things are at home, and if they have any food, Carlos' mother says yes and does not elaborate. Meanwhile, Carlos is malnourished, has chronic diarrhea, and failure to thrive. But, unlike Jose's failure to thrive, Carlos' seems nearly exclusively related to poverty - to little access to clean, affordable, and nutritious food and water, and to a parent who lacks a support-system and education to help her engage and care for her child, physically, mentally and emotionally. But there are encouraging moments: Carlos' mom returned my smile today. She wants to take care of her child, but doesn't really know how. I believe she is slowly warming up to us, which is the best way for us to care for both of them. Carlos and Mom: another family to keep in your hearts.

Even when I'm not at the clinic, I find these two sweet, small babies in my thoughts often. One baby probably HIV-positive and the other not. One with caring, dedicated, and persistent caregivers and the other with a single caregiver who's just starting to learn. Both families are fighting a difficult and terrible battle to raise their children. For me, both children are reminders of why I want to help and of what I need to do. Again, please keep them both in your thoughts and prayers.

3 comments:

Mary Higbee said...

Dear Kate, The practice of being present to the people of your mission like Carlos and Jose bring forth the deep and authenic love and compassion that you described in your writing. It is inspirational to read of it and to think of you experiencing it, even when it breaks your heart. You and the babies have ny prayers.

Mary Higbee

Leigh Preston and Andy Thompson said...

Thanks for your elegant words. It sounds like challenging, moving work.

Becky said...

Wow- reading this makes me feel so lucky and grateful - yeah, me, the terminal cancer patient. Because I have health insurance, access to some the best, most cutting-edge American health care, wonderful doctors with fancy degrees and fellowships, I have choices, I have education and understand what is happening to me, etc. etc. etc. It's mind-boggling, the difference between the haves and the have-nots. Almost makes me feel guilty, until I remember that it's not my fault I was born here, and that I've got a pretty awful disease, too.
It also makes me happy that you are there, Kate, making a difference in this third-world country and in the lives of some people there. I know they will never forget you. Thank you for doing this. Our brothers and sisters need us and you are filling the bill right now - rock on! And let us know what you need (prayers and love are being sent continually of course.). LOVE Becky