Saturday, July 28, 2012

Carly's Story

Carly's story is a really incredible one about an autistic girl getting her voice through typing. I cannot even imagine feeling trapped inside my body, as she expresses.

Yet a small part of me remains skeptical. As some of you may recall, there were a number of stories years back about facilitated communication, where a trained therapist assists an autistic individual with typing by holding the individual's hand over a keyboard. Unfortunately, studies showed that facilitated communication was not likely legitimate communication, but was actually a result of the facilitator guiding/influencing the communication by placing the autistic individual's hand. There is quite a bit of debate about the validity of the various studies, but they have consistently reported negative findings regarding the efficacy of FC.  I do not know whether FC works in some cases. Many parents are convinced that it does, and who am I to say otherwise? But there is at least some room to imagine the technique could be abused.  A 20/20 story exposed one instance that turned out to be a likely hoax, where a child accused her father of sexual molestation via facilitated communication. Naturally, this news report immediately made me think of that tragic outcome to what seemed to be an amazing therapy at the time.

But in this story, Carly guides her own hand, and at least to my untrained eye, it is pretty amazing. It seems like this "un-facilitated communication" (no one holding her hand) would be much harder to fake and influence than facilitated communication, especially in front of a camera and reporter. For Carly's sake, I hope this is a true picture of what is happening in her mind. And if it is, I think this is a real miracle that opens doors for one young woman, sheds light on autism in general, and offers hope for others.

Click the above photo to see the video about Carly

Friday, July 20, 2012

Obstetric Fistulas: A Preventable Tragedy

I recently read a book called, "Half the Sky: Turning Oppression into Opportunity For Women Worldwide," by Nicholas Kristof and Sheryl WuDunn. The book discusses some of the most pressing issues facing women today, what is currently being done to help, and what still needs to be done to alleviate the problems. Kristof and WuDunn essentially argue that the oppression of women is the most important problem of our time and that many other social ills would be at least partially remedied if the status of women improved worldwide.

The book covers some extremely interesting topics, from human trafficking to educational opportunities to maternal and fetal health. Some of the issues the authors discuss were completely off my radar previously, but they have since struck a deep chord in my heart. The stories told by Kristof and WuDunn are among the most heart-wrenching I have ever heard, and the work being done to combat some of these injustices is truly inspiring. I would like to cover some of these topics, one in this post and then hopefully others in upcoming posts.

Today, I want to write about obstetric fistula, a serious injury to a woman as a result of prolonged obstructed labor in child birth. I had never heard of this condition until I read "Half the Sky." And what I read horrified and saddened me.

Obstructed labor is defined by the World Health Organization (WHO) as the situation where "the presenting part of the fetus cannot progress into the birth canal, despite strong uterine contractions." The WHO also states that the most common cause of obstructed labor is a baby with a head too large to fit through the mother's pelvic brim. Other potential causes are a mis-positioned baby, and in more rare cases, locked twins or pelvic tumors. In the United States and other developed nations, obstructed labor is treated with surgical instruments that help the baby progress (such as forceps or vacuum extraction), or by cesarean section delivery. Due to these methods, most women in the U.S. with obstructed labor ultimately have a successful delivery. However, according to the WHO, "neglected obstructed labor is a major cause of maternal and newborn morbidity and mortality."

If left untreated, obstructed labor can cause asphyxia of the baby, leading to brain damage or death. In addition, prolonged obstructed labor can result in organ damage to the mother, and in very serious cases, obstetric fistula, a hole in the vaginal wall that connects the vagina with the bladder or the rectum or both. This condition is almost never seen in the United States, which is one of the main reasons I had never heard of it (and why even many OBGYN's in this country will never encounter it or learn to treat it). Obstetric fistula generally occurs in developing countries, where women often deliver children at home with an unskilled birth attendant or no attendant at all and may wait days to go to a hospital if the delivery is not progressing smoothly.

Once a fistula develops, the affected woman will be unable to control her bladder or bowel movements and will leak bodily fluids from her vagina.

The good news is that surgical procedures do exist to repair 90% of fistulas. The bad news is that many women who develop this condition have no access to a hospital that provides treatment and/or lack the funds to pay for it. If left untreated, a woman will essentially leak fluids for the rest of her life, and depending on her circumstance, may be divorced by her husband, abandoned by her family, and/or ostracized by society for the uncontrollable body functions and the odor of urine and excrement that she emits.

In "Half the Sky," Kristof and WuDunn tell the story of Mahabouba Muhammad, a young Ethiopian girl who was sold by a neighbor to be the second wife of a sixty-year-old man. Mahabouba was beaten by the man and his first wife, and when she tried to run away, she was caught and beaten even more severely. When she became pregnant, she feared for her life and the life of her unborn child, so at seven months, she finally made an escape back to her home town. When she arrived, she discovered that only her uncle remained, and he allowed her to stay in a hut nearby. I think it is best to tell the rest of the story in Kristof's and WuDunn's own words, from pages 94-95 of the paperback edition of "Half the Sky."
Mahabouba couldn't afford a midwife, so she tried to have the baby by herself. Unfortunately, her pelvis hadn't yet grown large enough to accommodate the baby's head, a common occurrence with young teenagers. She ended up in obstructed labor, with the baby stuck inside her birth passage. After seven days, Mahabouba fell unconscious, and at that point someone summoned a birth attendant. By then the baby had been wedged there for so long that the tissues between the baby's head and Mahabouba's pelvis had lost circulation and rotted away. When Mahabouba recovered consciousness, she found that the baby was dead and that she had no control over her bladder or bowels. She also couldn't walk or even stand, a consequence of nerve damage that is a frequent by-product of fistula.
"People said it was a curse," Mahabouba recalled. "They said, 'If you're cursed, you shouldn't stay here. You should leave.'" Mahabouba's uncle wanted to help the girl, but his wife feared that helping someone cursed by God would be sacrilegious. She urged her husband to take Mahabouba outside the village and leave the girl to be eaten by wild animals. He was torn. He gave Mahabouba food and water, but he also allowed the villagers to move her to a hut at the edge of the village.
"Then they took the door off," she added matter-of-factly, "so that the hyenas would get me." Sure enough, after darkness fell the hyenas came. Mahabouba couldn't move her legs, but she held a stick in her hand and waved it frantically at the hyenas, shouting at them. All night long, the hyenas circled her; all night long, Mahabouba fended them off.
She was fourteen years old.
When morning light came, Mahabouba realized that her only hope was to get out of the village to find help, and she was galvanized by a fierce determination to live. She had heard of  Western missionary in a nearby village, so she began to crawl in that direction, pulling her body with her arms. She was half dead when she arrived a day later at the doorstep of the missionary. Aghast, he rushed her inside, nursed her, and saved her life....

Obstetric fistulas are so troubling to me for multiple reasons.

The first is the terrible suffering it produces for those who must live with it, from the incontinence, to the indignity of the stench of bodily fluids, to the emotional cost of often losing the child, followed by the complete societal rejection that many women experience.

The second reason this complication is so troubling is that it is largely preventable. As I stated above, obstetric fistula is almost never seen in the United States, because women in obstructed labor have access to modern medical care before their labor is able to progress to that point. This should not be the exception in the world, but the standard of care for all women.

Furthermore, obstructed labor is more common in very young women who have not yet developed wide enough hips to allow for vaginal delivery; in many cultures, it is common for young teenagers or even pre-teens to be given in marriage and to conceive children. Delaying marriage and child rearing by a few years can make a world of difference, yet many young girls do not appear to have this option due to cultural or financial pressures. And without adequate access to health education, pre-natal care, and attended delivery, these young girls are put at even higher risk of problematic deliveries.

Another reason this condition is so distressing is that it is most often treatable once it occurs, but many women do not have access to the treatment. Given that poverty or lack of concern for women's health are largely to blame for prolonged obstructed labor in the first place, these are also core reasons why fistulas go untreated. The women who are most likely to get fistulas are the same women who are least likely to be able to access surgery. Unfortunately, this fate can subject a woman to a lifetime of completely unnecessary humiliation and despair.

As Kristof and WuDunn put it, obstetric fistula is the modern day leprosy.

The fact that this preventable and treatable condition is inhibiting the lives of nearly three million women worldwide is a true injustice, and something must be done! I confess that my heart has been able to remain hard to many troubling things in this world, but when I read the stories of women with obstetric fistula who have been castigated by society, I have no other option but to be heart broken. We must value the lives and dignity of women, and we must recognize that child birth is the basic reproductive function of a woman, not some fluffy privilege that should only be safe for the chosen few. The lives of these women and their children are not disposable - they are precious and sacred! These are real people, not objects to be cast aside by society or ignored out of apathy. Dignity matters!

So what can be done? Let me start with the remainder of Mahabouba's story from page 96 of the paper back version of "Half the Sky." You will recall that she ended up at the house of a missionary in a nearby village:
...On his next trip to Addis Ababa, he took Mahabouba with him to a compound of one-story white buildings on the edge of the city: The Addis Ababa Fistula Hospital.
There Mahabouba found scores of other girls and women also suffering from fistulas. On arrival, she was examined, bathed, given new clothes, and shown how to wash herself. Fistula patients often suffer wounds on their legs, from the acid in their urine eating away at the skin, but frequent washing can eliminate these sores. The girls in the hospital walk around in flip-flops, chattering with one another and steadily dripping urine - hospital staff joke that it is "puddle city" - but the floors are mopped several times an hour, and the girls are too busy socializing with one another to be embarrassed....
 ...In 1975, Catherine and Reg [Hamlin] founded Addis Ababa Fistula Hospital, and it remains a lovely hillside compound of white buildings and verdant gardens. Catherine presides over the hospital....She is an exceptionally skilled surgeon, but because some patients don't have enough tissue left to repair they are given colostomies, so that feces leave the body through a hole made in the abdomen and are stored in a pouch that must be regularly disposed of. Patients with colostomies require ongoing care and live in a village near the hospital.
Mahabouba is one of those who couldn't be fully repaired. Physical therapy got her walking again, but she had to settle for a colostomy. Still, when she had recovered her mobility, Catherine put her to work in the hospital. At first, Mahabouba simply changed linens or helped patients wash, but gradually the doctors realized that she was smart and eager to do more, and they gave her more responsibilities. She learned to read and write, and she blossomed. She found a purpose in life. Today, if you were to visit the hospital, you might well see Mahabouba walking around - in her nurse's uniform. She has been promoted to the position of a senior nurse's aide. 
This is a both a tragic story that never had to be and a wonderful story of redemption. According to Kristof and WuDunn, 90% of fistulas are repairable, with the operation costing around $300. (According to other sites I have seen, it can be closer to $450, but regardless, this is much less than a typical operation and rehabilitation in the U.S.) People like Catherine and Reg Hamlin are starting hospitals to serve these women around the world. Of course, there are still vast regions without hospitals, people who are unaware of the locations of the nearest hospitals, and women who are unable to afford the costs of care.

So what does that mean for a person like me? Truth be told, I am still trying to figure that out. I am not a doctor or a nurse who can fly away and perform a fistula repair surgery. I am not a counselor who can help women reintegrate into society. And I live very far away from where most of this is happening. It is very easy to feel distressed and saddened from the comfort of my home and then to go back to my everyday life. But that seems too easy and too wrong.

For a start, I am trying to get the word out about fistulas through this blog and through conversations with friends. Secondly, I have decided to support some organizations that are providing fistula surgeries or are building new hospitals to do so, and I would encourage others to do the same. Some of the organizations mentioned in "Half the Sky" are listed below. Thirdly, well, I am still working on the thirdly. I am not sure where this newly found knowledge will take me, but I hope that God can use me in some way to make a difference. Kristof and WuDunn do offer some non-medical ideas, their main one being to support education of women and girls. Apparently, one study showed that giving girls a new $6 school uniform every 18 months increased the likelihood they would stay in school and thus delay marriage and pregnancy until physical maturation. These are the types of solutions even non-medical professionals can actively support, and perhaps this sort of indirect route is where God will take me. That remains to be seen, but I will keep you updated if I am inspired in a particular direction.

I hope this issue lands on your heart as it has mine and that you too resolve to act in some way.

To learn more about obstetric fistulas or to support organizations that are already helping provide prevention and care, take a look at these sites:

Tuesday, July 17, 2012

Cambodia Trip Update #2

It is hard to believe that Matthew and I have about one month left until our trip to Cambodia. Needless to say, we are getting tremendously excited!

We were very encouraged at our Cambodia team retreat by the relationships being formed, the information we learned, and the planning for our service to the community. There is still a lot of work to be done, as some of our members prepare original child-geared lesson plans, games, crafts, and skits for the week of kids' club. Matthew and our friend Joyce So are also leading the musical worship, so they are in the midst of choosing songs and learning them. (I am getting annoyingly familiar with the YouTube versions of a number of child songs as Matthew picks them out on his guitar nightly.)  Personally, I am part of the team that is planning a party for rescued girls at the rehabilitation house and have been put in charge of decorations. (I would love suggestions for how to play up our Hawaiian Luau theme!) Once we get to Cambodia, all team members will participate in the various activities, but these are just the groups that have been assigned to do the preparation work. We got a good start on planning activities during the team retreat, but we all have to step up our game to make sure everything is ready before we go!

Please pray for continued team unity, effectiveness in planning and ministry, full financial funding for all of our team members, and growing hearts for the people of Cambodia.

We were also recently blessed by our bible study small group when one of our members/friends organized a get-together to share our hearts, discuss the details of the trip, and gain additional supporters. Our friends asked a lot of good questions and prayed over us in a meaningful and special way. We also had a lot of fun sharing a delicious potluck dinner and just hanging out with the people we have come to love in the Bay Area.

And in other news....Praise God! Shortly after the dinner with our friends, Matthew and I got word that we are fully funded at $5,800! Thank you so much for making this mission trip possible with your generosity and prayers!

For anyone who is still interested in partnering with us, please let me know, and I can add you to our list of prayer partners. Additionally, any extra funds raised by us above and beyond our personal fundraising goal will go to other members of our team who do not meet their respective fundraising goals.

We also have a dear friend, Joyce So, who is going on the trip with us, and she is still raising support. (She is the friend I mentioned above who is in charge of the music with Matthew. She is also a former teacher and is largely heading up the curriculum design for the kids' club.) If you had been thinking about donating but missed the boat before we were fully funded, please prayerfully consider directing funds her way! If you would like to make a contribution online, you can do so through our church's website. (Go to this red link, select "Donate Here," and choose Joyce So from the drop-down names.) Alternatively, if you would like to mail a check, please send it to MPPC Mission Dept. / Cambodia STM Trip / 950 Santa Cruz Ave. / Menlo Park, CA 94025 with a note indicating that it applies to Joyce So.

We have our vaccines done, our funds raised, and our detail planning in process. Now, we are just getting very excited to be on the ground in Cambodia! Thank you all so much for your prayers, encouragement, and financial partnership. And thank you for continuing to support us; we could not do this without you!