IOWD

2014/03/05

Janet Dewan CRNA, MS

“I cared for a woman who had been suffering as an outcast for 25 years, since her first baby. ItRead more →

2014/03/05

Barbara Margolies

“Have you ever met a woman with fistula? It is absolutely devastating. The smell is so overwhelming some people can’tRead more →

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Janet Dewan CRNA, MS

“I cared for a woman who had been suffering as an outcast for 25 years, since her first baby. It only took us 30 minutes to repair her fistula.”

Janet is a nurse anesthetist based in Boston, U.S.A. She first worked in Niger in the 1970s and has returned there many times, and now works regularly in Rwanda with the International Organization for Women and Development, an organization that provides fistula repair surgery to women suffering from this condition.

Is there a gender imbalance in access to surgical care?

When there are shortages in healthcare, women and babies are often the ones least advantaged.

It’s not at all unusual to find in the maternity section that the monitoring or anesthesia equipment is inferior to what’s used even for minor surgery in the same hospital. Childbirth is something that is considered just a natural process. But without a skilled birth attendant, and access to resources such as safe surgery if a c-section is required, it carries a high mortality with it. There is a vast global disparity in maternal and infant mortality statistics between well resourced and developing health systems.

What is an obstetric fistula, and how does it happen?

There are two types that we see. The first is obstructed labour – the woman is in labour for days without progress. The baby’s head pressing against her pelvic organs, so that no blood flow can get through, causing ischemic tissue damage.. The baby may die before the women receives help , and by the time it passes she has developed an ischemic hole, either between the vagina and the bladder or the vagina and the rectum.

Fluid freely flows out, of her vagina and she becomes incontinent.

The second type of fistula we see results from damage to pelvic organs after surgical interventions, Ceasarian Section. These injuries tend to be higher, involving the bladder and uterus or in the cervical region and often require open abdominal surgical repairs.

Can access to surgical services reduce the risk of fistula?

Absolutely. Fistula is a direct result of lack of available maternity and obstetric care, and the rate of C-section in some low-resource settings is very low, in others skilled health providers and other resources are not available for surgical and anesthesia care. when C-section is indicated.

Lack of personal and capital resources contribute to surgical care being performed under less than the safest circumstances. Some women do not have access to skilled services. Without an adequately trained birth attendant who recognizes the need for intervention and knows how to get a mother to it, complications are either not treated or treated too late so that complications , such as obstetric fistula result.

My own specialty, anesthesia, is not always available to care for the mother and infant. Anesthesia care goes beyond simply administering a spinal anesthetic. Monitoring the mother, so the earliest signs of serious complications are detected while they are correctable, is probably the most important anesthesia function. Anesthesia personnel also care for fragile infants. Anesthetists need to recognize their role in safe surgery goes beyond the technical. Current anesthetists should have the opportunity to participate in continuous education opportunities so they can be mentored in current principles of safe practice, interpretation of monitoring and appropriate interventions,.

Without the training and the resources it’s impossible to meet global targets for safer surgical care.

Does fistula ever occur in wealthier countries?

It does happen occasionally with urgent or repeat sections or can occur following pelvic radiation therapy.. At our hospital in Boston a woman suffered a fistula following a second urgent C-section – but we were able to repair her, with all that fancy equipment and skilled personnelwe have. She’s fine, the baby’s fine. Of course she wasn’t happy to have the complication, but that’s how treatable fistula is, how little suffering should go with it. Two weeks after her injury she was repaired and home caring for her healthy baby and toddler.

On the other hand I cared for a woman in Niger who had been suffering as an outcast for 25 years, since her first baby. It only took us 30 minutes to repair her fistula under spinal anesthesia

What can women around the world do about this?

I see quite a large number of female medical students these days – in Rwanda I have met many outstanding female medical students and I think this is likely to make a difference. Nurses and midwives also have an important role if they educate women about their bodies and normal birth and empower them to seek the appropriate care they deserve. Safe maternity care is a core component of the right to health.

It’s estimated that up to 500,000 women are suffering with the condition with 50,000 new cases at year. With our current resources we have the capability to treat barely 12,000 of these cases every year. The fact that fistula is a too common obstetric complication that occurs almost exclusively in the poorest countries, speaks to the global disparity in access to health care, including health personnel and other resources. Fistula is almost completely preventable and if it occurs it is treatable. The global capacity to eliminate this scourge exists,

And nobody should be suffering for any length of time.

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Barbara Margolies

“Have you ever met a woman with fistula? It is absolutely devastating. The smell is so overwhelming some people can’t go into the same room.”

Barbara, a retired New York City elementary school teacher, is the Founder and Executive Director of IOWD. She’s an educator, author, lecturer and photographer who has worked in development projects for more than 25 years.

50-100,000 women worldwide develop obstetric fistula each year, but you don’t seem to hear a lot about it.

I’ll tell you why. Because it’s not pretty. It’s not sexy enough. Once Oprah did something so that was ok, but generally people don’t want to talk about women leaking urine or feces. Women hysterically crying because you can’t help them. What do you do, put that in the newspaper?

There is so much publicity about HIV, tuberculosis, malaria; children with facial deformities and sweet smiles, but there isn’t a lot of publicity about this. So most people don’t know what fistula is about. I certainly didn’t when I first learned of it years ago.

But when they learn of it, they’re shocked.

What is life like when you’re living with this condition?

Have you ever met a woman with fistula? It is absolutely devastating. The smell is so overwhelming some people can’t go into the same room. They’re constantly washing their clothes. When they get undressed for medical exams you will see they’re wearing so many layers, plus plastic wrapped around them.

Some of these women have been living with a fistula for decades, and they’ll go from hospital to hospital looking for help. Some are so isolated they think they’re the only one with this condition. Often their husbands leave them; their friends; even their own children are repulsed. So there’s no physical touching. No one to hug them. No one to talk to.

You are completely alone. And that’s something that if more women in the world understood, then maybe more would pay attention. My God, they would gather, they would fundraise, they would support organizations that provide education and training and safe surgery.

There’s a nursing assistant you worked with in Niger, Mariama – she came to you with a fistula?

She was going to kill herself. She tried twice, but her mother stopped her.

Mariama had an arranged marriage at 15, got pregnant with a baby boy and went into obstructed labour. He died inside her, and she developed a fistula. She lived in the courtyard of a hospital in Niger, and we met her when she was 30.

In the exam room for the first time I saw that someone had given her a colostomy – I don’t know who, I don’t want to know who – and from a hole in her stomach she had a garbage bag. There was feces all over her, the smell was appalling. She was very much alone, and desperate. She wanted to die. Our doctors repaired Mariama and gave her back her life…and I have to tell you – she is one dynamite woman.

One night when we were at the hospital a catheter came out of one of the patients and there was no nurse, no doctor. So Mariama put the young patient in a wheelchair, pushed her all along the broken cement of the hospital grounds to the emergency room, demanding a doctor to re-insert the catheter. And then she put her back in the wheelchair and brought the girl back to the ward and stayed up all night with her.

You can share that story, because Mariama is remarkable. It shows what women can do for other women. Women who have nothing, still helping each other. Women who understand the pain and humiliation of fistula are happy to help their sisters.

Because unfortunately we know that surgery isn’t always safe.

Some of the women have been operated on before; you see what has been done and it’s horrible, it’s cruel, it’s immoral. Sometimes doing surgery is not the right thing to do, and people don’t understand that. You can’t fix every woman with fistula.

That’s why you need education. Fistula can be prevented – so can maternal mortality, child mortality, all the terrible infections… if you have access to antenatal care and safe obstetric surgery at the right time.

But in the meantime we have to counsel these women, tell them we can’t help them. We give them – which is a sad comment – two cloth diapers and waterproof panties that we make ourselves. When the diapers are ruined they’ll use rags, or whatever cloth they have. At least their clothes won’t be wet; at least the urine won’t leak down their legs.

But when women get access to safe fistula repair surgery – I wish the world could see that too. Last visit to Rwanda we held an outreach session for 70 fistula women, under a big tree at the hospital. About 15 had returned from our previous visit, all dry, and I cannot even begin to describe the explosion of emotion that ran through this group.

The women asked questions, expressed their frustration – and their amazement that there were others with the same problem. When the dry women stood up, they clapped, began to sing and then dance. There was hope. It was electric!

It’s all we need to know that we must keep returning to help and teach the local medical staff so that one day they will do theses surgeries on their own.

Tell us why unsafe surgery is our issue.

We take surgery for granted. But it has got to be available to every woman. It’s 2014! It is every woman’s right to have safe surgery offered to them. Women are the strength of every nation – in low-resource countries they carry the heaviest burdens. They deserve to have safe surgery, it must be provided for them. If women throughout the world stand together, we can help make safe surgery a reality for all.