Sunday, February 3, 2013

Patient Stories- VVF


I want to share some of our wonderful, amazing patient's stories with you.  Our wonderful writers on the ship spend some time with a few of the patients, getting their stories down on paper.  They tell of heart break, pain & hope for a better life.  Here is one of those stories...

Above Mariama’s hospital bed someone taped a picture from the day she was admitted. Whenever I visit her, I admire it. That day, she wore a traditional headscarf and an easy smile – radiating of timeless optimism. The faded black-and-white print has a vintage look to it, allowing me to imagine that, if I turn it over, I might find some inky cursive writing that says her location and year. I look at the photograph, and I pretend that Mariama is a mysterious young woman who lived a century ago.

Because in many ways, she is.

Mariama and I are the same age. She was born in rural Guinea, and I in the urban United States. Mariama became pregnant when she was 15 years old; I imagine that she was terrified. Having been married off at age 13, her childhood was cut short, although no shorter than what is expected in her tribe’s culture. When it came time for her to deliver, Mariama’s pelvis was too small, and the hospital was too far. In her Guinean village, she delivered a stillborn baby after three days of labor.
Until I met Mariama, ten years after her agonizing delivery, I had never heard of vesicovaginal fistula. The population of women who need C-sections but cannot have them wasn’t a reality for me. I didn’t appreciate the social impact of VVF or recognize just how many women – more than 2 million, according to the UN Population Fund – suffer from it in sub-Saharan Africa and parts of Asia.

When 15-year-old Mariama did not have access to emergency obstetric care, the pressure of the fetus and the trauma of the obstructed birth tore a hole in the wall between her vagina and bladder. Until the hole can be surgically closed, Mariama will leak urine continuously, as she has for the past decade. She tells me the story of her delivery, her stillborn baby and subsequent pain with mixed emotions – grief for the child she lost, and gratefulness for the fact she lived. You see, VVF is the mark of a woman who did not die in childbirth; it is only endured by survivors. The fluid trickling down Mariama’s legs and the odor that follows her wherever she goes are the consequences of her narrow escape.


After surgery
In the United States, stories like Mariama’s haven’t been told in more than 100 years. In the delivery rooms of the developed world, VVF is preempted with a cesarean section or, in the rare cases, promptly repaired. When natural labor fails, modern medicine prevails. Today, VVF keeps company with obsoletes like smallpox and polio in the shadows of Western medicine, where its symptoms are referenced in the past tense.

In the developing world, VVF is Mariama’s reality. Because the odor of leaking body fluid is powerful, the social stigma of VVF is harsh. When it became evident that Mariama’s condition was not going to correct itself, her husband left her. Mariama was unable to sell fabric in the market because her skirt was always wet – and, without the support of her husband or his family, she had no means of supporting herself. For women suffering from VVF, physical diagnosis becomes a debilitating social prognosis.

Eager to restore the health of her oldest daughter, Mariama’s mother sold the family’s ten cows to pay for transportation to Conakry and surgery. In this, Mariama was fortunate that such resources were available and that her mother didn’t turn her out as so many families do. Most of the women I've met with VVF in the wards have lived their lives in solitude, ostracized by their husbands and families.

Mariama overcame significant obstacles in logistics and finance to get from her small village to a hospital in Conakry. Unfortunately, the surgeons could not fix her fistula. Local doctors suggested she seek surgical care from the hospital ship that would soon arrive in Guinea.

On their referral, Mariama came to the dock in her nicest dress and headscarf, still hopeful that someone could help her.  But Mariama’s surgery onboard the Africa Mercy couldn’t repair the damage. Across the ward, two other VVF patients, Isabel and Kada, had received the same prognosis. The three women gathered around each other, sitting on absorbent blue and white cotton pads, softly crying.


Some of the ladies on the ward
While Mercy Ships nurses wrapped their arms around the weeping women, I thought about the long walk that brought the three of them here. They were let down by their culture, which married them too young. They were let down by motherhood, which had rendered them incontinent. They were let down by their husbands, who rejected them for the smell. They were let down by their society, which considered them unworthy of love. These women, I thought, have been consistently abused by this world. The urine that trickles down their legs each day reminds them they have known no mercy in this life.

But after the disappointment had subsided, Mariama caught her breath. “I will keep trying,” she said to me. "I have seen other women in here be healed from this, and I want to be healed. They did not tell me that there is no hope."

I had underestimated her spirit. In my narrow focus of her situation, I had lost sight of the reality of Mariama’s character – an abbreviated youth, a traumatizing delivery, a lost child and painful rejection. Yet here she was. Mariama is a survivor. Why should this be any different?

The following week, seven patients who had successfully recovered were discharged from the Africa Mercy hospital. As part of the Mercy Ships VVF program, the women are given new dresses when they are discharged to symbolize their re-entry into society. The Dress Ceremony marks the beginning of new life, but I worried that celebrating the happy endings would magnify the disappointments of others.

I was wrong. There was no trace of disappointment in the ward that day, only pure happiness. If the discharged VVF ladies were brides, then the ladies in hospital gowns were their eager bridesmaids, giddy with hopeful anticipation for their own big day. In my office two flights above the ward, the music came through the corridor. I went downstairs to find the women of B Ward dancing and singing. Even the women kept in bed by their catheters waved their arms and clapped. If not for the bright dresses, I could not have distinguished who had been healed – by the looks of it, they all were healed. Just as the VVF women were united by their difficult journeys, so were they united in each other's joy. I thought about what Mariama had said to me – that she believes healing is possible – and I realized the importance and strength of hope.

Advancements in emergency obstetrics in the developing world are decades away from making VVF history; according to the World Health Organization, an estimated 100,000 women are newly affected each year. Within our Western hospitals, VVF is a thing of the black-and-white past – but for Mariama, and many just like her, it is still a reality. Mercy Ships may not always be able to undo the damage. Not every patient is a success story. But no matter the outcome, we show them love, acceptance, and a life worth hoping for. The wound Mariama carries may never be healed. Yet, in spite of her hard journey, the hope she carries will never be drained.

I taped a photograph of the Dress Ceremony above my desk – right next to my copy of the picture Mariama had over her hospital bed. What I like most about the colorful print of dancing women is that when I look at it, I don’t see a long history of suffering and let-downs – I see the future.

Story by Catherine Murphy
Edited by Nancy Predaina












This is just one of the many heartbreaking stories we hear on the ward.  VVF is a terrible thing that effects millions of women world wide & is 100% preventable!  These women are beautiful, loving & the strongest people I've ever met.  It is true that sometimes we can't repair the women, the damage being too severe, but with God's help, we can be successful in healing these women & for that we are thankful.  Dress ceremonies are important, not just for the ladies who are dry & ready to go on with their lives, but also for the doctors & nurses who take care of them, it lets us know that its all worth it just to see those beautiful ladies with big smiles on their faces proclaiming to the world they are dry & healed! 

Please continue to pray for our ladies.  The ones who are dry & most importantly those who are not yet & those who may never be. 

Blessings

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