Sometimes, trying to have a baby can turn you into a leper. I wish I was exaggerating, but I am not.
Chero is one example. Everything went fine with Chero’s pregnancy, but when she went into labor with her first baby, things did not go as they should. Despite hours and hours and hours of contractions, the baby did not come. Chero was out in a village in rural Kenya where most women deliver their babies at home, with a midwife to help them. The hospital is far, far away.
Chero had obstructed labor. Obstructed labor is bad for babies and bad for mothers. Babies often die, as Chero’s baby did. And Chero’s problems during childbirth led to permanent damage to the insides of her pelvis and to a childbirth injury called a fistula. Once you have a fistula, you start leaking urine or feces from your vagina. Once you have a fistula, you are a leper.
You stink, you leak, you are shunned. Your husband often rejects you. Your family may do the same. No one wants to be near you. They may called you cursed or bewitched. You are isolated and scorned. And as you do your best not to eat or drink too much – anything you can think of to stop the terrible leaking – you may become weak or sick with infection. You probably will never have another baby. You may well be left to die.
Over 2 million women in the world right now live with fistulas. Most of them live in Africa and Asia – shunned and silent. Modern lepers, just as truly as those I often talk about who are stigmatized by HIV.
Your chance of having these childbirth complications is a lot higher if you were married young, if you tried to have a baby before your body was ready. Your chance of having these complications is higher if you live in a poor place where you don’t have access to C-sections or medical attention when you are giving birth. Your chance of having these complications is higher if you live in a place where tradition maintains that your genitals are cut. In Africa, especially, too many girls live in places where marrying very, very young, having female genital cutting, and not having access to healthcare are the norm. Chero had all of these conditions. So do many of the women of Kenya. And many become lepers because of their fistulas.
But here is the amazing thing – these fistulas can be fixed. A surgeon with the right skills – and dedication to fixing the problems of shunned, silent women – can completely change the story of women like Chero.
This week, I had the pleasure of talking with one of my heroes here in Eldoret, a Kenyan surgeon who specializes in fixing fistulas. Dr. Hillary Mabeya has devoted much of his life to helping women and girls with fistulas. Women and girls injured in childbirth, injured in sexual assaults, injured in ways that many people don’t want to talk about. This is a doctor who works for the voiceless, for the despairing, for the stigmatized. I am proud to have him as colleague in AMPATH and at the Moi University School of Medicine.
Dr. Mabeya works late into the night, works on weekends, works in remote parts of the country – all to help these silent and shunned women and girls. In 2009, he opened a center in Eldoret called Gynocare that provides, not only the much-needed surgeries for these women and girls at no cost to them, but also provides rehabilitation throughout their recovery and psychological support.
From young girls who develop fistulas after early arranged marriages and childbirth problems to old women who have suffered through rejection and stigma for decades, the Gynocare wards – and even Dr. Mabeya’s home – are full of women who suddenly have the chance to stop living as pariahs. Women for whom life suddenly has hope again. Almost 5,000 of them, Dr. Mabeya estimates. They come from the most remote parts of Kenya – and from Somalia, from South Sudan, from Uganda. Coming for a chance at hope, a chance at healing.
I talk a lot about those stigmatized and suffering with HIV, but this is another condition of stigma and suffering — one that affects girls and women in the world’s poorest places. If I was a surgeon, this is what I hope I would be doing. Giving these women a second chance at life is one of the best investments I can think of. If you want to change Chero’s story, think about a donation to Dr. Mabeya’s Gynocare Centre or to the organization A Little 4 A Lot which supports his work.
There is nothing I love more than seeing solutions for the problems of the broken, the poor, the forgotten. I love seeing how Dr. Mabeya changes the story for East Africa’s suffering women and girls.
As I grabbed a late lunch today, I was asked what actually happens in my research projects. This is how I explained one of my studies (with pictures from my phone this week):
From the first day a child is diagnosed with HIV, their parent is worrying about how they are going to tell this child that they have HIV. When will they have to tell them? How will they tell them?
This mother probably won’t tell her daughter that she has HIV until she is 13 or 14 years-old. But she already worries about it. She is afraid that other people will find out about the family’s HIV and then the whole family will be stigmatized. She worries that her daughter will think this diagnosis means that she is doomed to immediate death. She fears that her child will blame her for this virus that passed from her body into her daughter’s.
My research project is trying to help with this challenge. We want to support families as their HIV-infected children grow and thrive and get closer to adulthood. We are trying to figure out how to help families with this process of disclosure, and also to figure out what the impact of disclosure is. Does it help their children take their medicines if they know why they are taking them? Do the children become depressed or anxious? Will the family experience more stigma?
In our study, at eight of our largest clinics, research assistants are following hundreds of families with HIV-infected children very closely. A research assistant like Cleophas monitors whether the child has been told of their status, how they are doing with their medicines, and lots of things about their physical and mental health. Here’s what it looks like while he evaluates a family:
At these clinics, we have also put into place a set of services to try to help families in this process. We have counselors like Tabitha who counsel parents, caregivers, and children — to address all of those fears that parents have and to guide them and their children through this entire process. Tabitha works in this cordoned off hallway space to counsel our clients. She used special materials, including videos, that we designed just for this setting. She also is getting ready to start doing group counseling and support sessions for those children that have learned that they have HIV.
And so, we hope that our research means answers and better tools to help families in poor places throughout the journey of managing this virus!
This is just a Friday Fluff addition: I looked like a proper Kenyan lady today in my bright, ruffled blouse. And despite the various heart breaks of this week, I am happy to be here, doing this work that I think I was meant to do.
“We don’t know her name.”
The tiny girl carried in by one of the volunteers from the Pediatric Centre in the hospital could not have a sadder story. Her mother died, and she was found on the floor of their home all alone after however many days it had taken for someone to realize that her mother had passed. Her body tells a story of many months of not-enough-food and sickness and neglect. We don’t know how old she is. And we don’t know her name.
Somehow, out of all those sad details in her story, that one stuck with me. We don’t know her name.
Today’s specialty in my HIV clinic seemed to be very sick children with both TB and HIV and complications that made it almost impossible to find the right combination of medicines for them. The medicines that can cure TB cause problems for our HIV medicines, making them not work right. And the usual medication options to get around these problems are not possible if you have certain complications, as the children I saw today had. A damaged liver. Too malnourished. Too little to take tablets. All of these things and more conspired against our already-limited options.
I was frustrated over my inability to come up with good solutions for these kids and the need to choose between not-so-good and possibly-worse.
And then I really looked at her, girl without a name. Beautiful and precious despite her emaciated body and sores and tube for feeding down her nose. No matter how sick and poor and overwhelmed she was, this girl’s mother surely chose a name for her daughter that was as beautiful and precious as she is. Parents give so much thought to a child’s name. So much of this little girl’s story lost to this virus…
But we begin a new chapter. Hers has been a story of grief and loss. We try to change her story into one that is headed to health and happiness and hope.
I start medicines for her HIV on top of the medicines to treat the TB in her lungs. I refuse to accept the verdict that we are out of the nutritional supplement that will give her much-needed calories, and – sure enough – some plumpynut is miraculously found. The lab tells me that they cannot run the test I need because they are out of vials for blood, so I send her back with a vial from my study supply. We try. We try.
And at the Pediatric Centre on the wards, where the volunteers look after abandoned babies with great care, they have given her a new name.
May her story change.