Conflict Fistula and Family Planning Eastern Democratic Republic

Conflict, Fistula, and Family Planning Eastern Democratic Republic of Congo Nerys Benfield MD University of California, San Francisco

Objectives • Reproductive health in crisis situations. • Genital fistula - etiology, obstructed labor injury complex, social impact, and methods of treatment and prevention. • Unmet need for family planning in the fistula population.

Democratic Republic of Congo 12 th largest country by geographic area in the world • Population: 71 million • Per capita GDP 2 nd lowest in the world - $171 1877 -1960: Belgian royal protectorate then colony • Infamous for atrocities and exploitation in extraction of resources like rubber 1971 -97: Zaire • Mobutu authoritarian regime

Eastern DRC - “Africa’s World War” 1996 -Present • Directly involved DRC, Rwanda, Burundi, Uganda, Zimbabwe, Namibia, Angola • Estimated 5. 4 million conflict -associated deaths in DRC alone • More than 3 million displaced persons Coghlan B Mortality in the DRC. IRC

History of DRC Conflict 1994: Rwandan genocide 1997: Overthrow of dictatorship of Mobutu Sese Seko Alliance of eastern rebel leader Laurent Kabila with Burundian and Rwandan armies 1998: Alliance falls apart → lawless state with multiple armed groups Land resource scramble Failed peace accords 1999 2002 2008

Complex Humanitarian Emergency • Social disruption • Armed conflict • Population displacement • Collapse of public health infrastructure • Food shortages In DRC: • >150, 000 in refugee camps • >2 million internally displaced 70 -80% of refugees are women and children UNHCR Global Report DRC 2009 Al Gasseer J Midwif Women Health 2004

Reproductive Health in Complex Humanitarian Emergencies Fertility rates can increase or decrease • Replace lost children • No access to contraception and safe abortion • Malnutrition • Destruction of family unit Waiting for USAID food distribution • Economic challenges Mc. Ginn HPN paper 45 2004

Maternal Mortality increases • Obstetrical complications • Hemorrhage, infection • Obstructed labor, fistula MMR in Afghanistan 8 x MMR of all neighbors Maternal + Neonatal → 22% of camp deaths in Pakistan • Unsafe abortion Little available evidence Burma – 1 in 3 have induced abortion Camps in SSA – increased complications from abortion

Gender-based Violence increases • Perpetrators outside the home • Percentage of women raped during conflict • Rwanda 39% >500, 000 women and girls • Burundi 25% • East Timor 24% • Kosovo 26% → Decreased to 1% after the conflict

Reproductive Health in DRC • Healthy life expectancy for women is 39 yrs • Estimated Fertility Rate = 6. 7/woman • Maternal Mortality Rate = 990/100 K – improved from 1837/100 K in 2001 • ↑poor pregnancy outcomes with ↑conflict activity

Sexual Violence in DRC • Epidemic of Rape - Used as a “weapon of war” to destabilize and intimidate communities - Culture of impunity • Total number of women affected is unknown – >40, 000 reported rapes by 2004

My Research Conflict No Healthcare Sexual Violence Large fistula burden Contraceptive and fertility desires and the impact of contraception counseling in genital fistula patients in Eastern DRC Traumatic birth experience Access to Family Planning

Research Question • Will the lost years of childbearing and societal acceptance spur women with fistula to desire more children or will the history of serious health sequelae from reproduction lead patients to want to delay further pregnancies. • Are women who would like to defer or limit future childbearing willing to use contraception?

• 2008: Needs assessment – N=78 – Interviews on history, birth experience, contraceptive and fertility desires • 2010: Contraceptive counseling program and assessment – N=61 – Changes in contraceptive knowledge and use

Security and Safety Active Conflict Zone • Secure Housing and Transportation – Provided by Congolese NGO HEAL Africa • No travel at night without armed personnel • No travel to rural areas without official permission and appropriate personnel • General Awareness is critical Our night-time armed guard

Goma Volcano Nyiragongo Massive eruption 2002 - destroyed much of the city - left 120, 000 homeless Unaffected area of town

Genital Fistula • Approximately 3 million women worldwide are suffering from fistula at this time • Occurrence worldwide is 1 -2/1000 deliveries • In Africa the incidence of genital fistula is 30, 000 -130, 000 per year. • Clear indicator of health care disparities Wall LL. Lancet 2006

History of Fistula 2000 BC - EGYPT “Incontinence of urine in an irksome place. " 1000 AD - PERSIA "In cases which women are married too young, and in patients who have weak bladders, the physician should instruct the patient in prevention of pregnancy. In these patients the fetus may cause a tear in the bladder that results in incontinence of urine. The condition is incurable and remains so until death. ” 1840 s - USA Dr J Marion Sims – early surgical techniques

Etiology of Fistula Obstructed labor The compression of fetal head against sacrum and symphysis cuts off blood supply leading to pressure necrosis Largest series of women with fistula (N=16380) - 94. 4% due to obstructed labor Muleta M, Acta Obstet Gynecol 2010 DRC 2008: 71% obstructed labor, 20% trauma, 9% surgery

Etiology of Fistula Trauma – Rape and sexual assault – Direct genital trauma DRC 2008: 20% caused by sexual assault DRC 2010: 0% Iatrogenic/surgical – Hysterectomy and cesarean section DRC 2008 - “The soldiers stole me and took me as a wife. I got pregnant. When I had trouble with my labor they cut my baby out with a machete in the forest”

Risk Factors for Obstructed Labor 1. Pelvis too small – Young age at pregnancy • Large series from Ethiopia and Nigeria >50% had become pregnant before age of 18 • DRC 2008: 63% were pregnant before 18 – Malnutrition 2. Fetus too big – Male fetus – 77% of fistula Moerman ML Am J Obstet Gynecol 1982 Vangeenderhuysen D. Int J Gyncol Obstet 2001. Meyer L. Am J Obstet Gynecol 2007

Risk Factors for Obstetric Fistula • Lack of Access to Obstetrical Care - Average labor - 2 -4 days DRC 2008: 25% labored 4 -7 days DRC 2010: 60% >5 hours walk from nearest hospital “Since it was my first, they said it is normal for this to take a long time. When they realized it wasn’t going as planned, they tried to find a car but couldn’t. So I went on a donkey cart. The trip took a whole night. ”

How does conflict affect direct fistula risk factors Fistula causes Conflict Obstructed labor ↓ Access to Obstetrical Care Trauma ↑ Sexual Violence Iatrogenic ↓ Surgical capacity and knowledge

Genital Fistula Complex • Urological injury • Gynecological injury • Gastrointestinal injury • Musculoskeletal injury • Neurological injury • Dermatological injury • Fetal injury – demise >90%

Genital Fistula Complex - cont’d • Social injury Social isolation Divorce Worsening poverty Malnutrition Depression and suicide Premature death Nigeria: 74% were divorced or separated Ethiopia and Bangladesh: 40% had considered suicide Goh JT BJOG 2005 112: 1328 Browning A Int J Gynecol Obstet Aug 31 2007 DRC 2008: 56% rejected by their community

Genital Fistula Classification The Goh Classification is the most commonly used system. Site Type 1: Distal edge of fistula > 3. 5 cm from external urinary meatus Type 2: Distal edge of fistula 2. 5 to 3. 5 cm from external urinary meatus Type 3: Distal edge of fistula 1. 5 to < 2. 5 cm from external urinary meatus Type 4: Distal edge of fistula < 1. 5 cm from urinary meatus Size (a) Size < 1. 5 cm (b) Size 1. 5– 3 cm (c) Size > 3 cm Scarring (i) No or mild fibrosis around fistula/vagina and/or vaginal length > 6 cm capacity, normal capacity (ii) Moderate or severe fibrosis around fistula/vagina and/or reduced vaginal length and/or capacity (iii) Special consideration, e. g. post-radiation, circumferential fistula, ureteric involvement,

Fistula Treatment • Conservative – For recent VVF<1 cm Bladder drainage up to 4 weeks Spontaneous healing in 12 -80% • Surgical closure 2 -3 layer repair Post-surgical treatment includes bladder drainage for 2 -3 wks, nothing in vagina for 3 months.

Fistula Treatment Surgical closure is generally very successful. Ethiopia: (N=77) 97% of complex fistulas closed successfully Nigeria: (N=899) 92% successful closure Failure associated with large size, UVJ involvement, scarring Roennenburg ML Am J Obstet Gynecol 2006 195: 1748

Fistula Treatment Complicated and large fistulas can require more complex surgical techniques • Bulbocavernosus Flap • Ureteral reimplantation or ileal conduit • Neo-urethra from bladder or labial tissue • Sub-urethral sling Eilber, KS J of urology 2003 Browning A. Int J Obstet Gyencol 2006

Challenges after Surgical Repair • Post-operative incontinence • Social isolation – Social reintegration – Income-generating skills – Counseling • Fistula recurrence – vaginal delivery after repair 11% recurrence Murray C. BJOG 2002 Carey MP Am J Obstet Gynecol 2002 Mac. Donald P Int J Obstet Gynecol 2007

Fistula Prevention • Avoid Pregnancy Access to Family Planning • Safe Delivery Access to Obstetrical Care DRC 2008: 22% fistulacausing pregnancies were undesired Improve the status of women International Women’s Day at HEAL Africa

Prevention in Conflict Settings Reproductive Health is often neglected in complex emergencies 1995 - Minimum Initial Service Package for Reproductive Health (MISP) – Set of reproductive health priority actions meant to save lives in an emergency setting – Focus on GBV, HIV, and Safe Delivery – EC and condoms are the only FP methods in acute phase

Prevention in Conflict Settings Challenges to MISP implementation • Views of governments and aid agencies “We are a catholic agency, conservative. … We don’t need to have reproductive health as a priority because we’ve so many other things to do. ” • Multiple priorities • Lack of collaboration • Limited resources • Logisitic difficulties Hakamies N Repro Health Matters 2008

Heal Africa Congolese NGO • 300 bed hospital • Community education and training programs Hospital Grounds 1300 fistula repair surgeries since 2004

Women with Fistula Demographics: (2010) • Age: • 31 [range 16 -46] • At time of fistula – 19 [range 12 -40] • Access to hospital: • Median distance of 67. 75 km • 59. 3% of women walked >5 hrs [range 10 m-3 d walking] • Fistula Etiology: – 93% obstructed labor, 7% surgical • Fistula Outcomes: 88% fetal/neonatal demise (71% of women had no live children) 59% divorce or social isolation • Sexual Violence Rate decreased from 70% (2008) to 39% (2010)

Birth Experience • Birth was experienced as traumatic: DRC 2008: – 67% rated their last birth experience as “terrifying” – 69% afraid they were going to be seriously hurt or die during their last birth DRC 2010: – 96. 5% afraid they would be seriously hurt or die during the fistula-causing labor and delivery “I survived only by the grace of God”.

Post-Repair Intentions DRC 2008: • 47% wanted to wait at least 1 yr • 14% did not want any more children DRC 2010: • 64% wanted to wait at least 1 yr • 18% did not want any more children Reasons for waiting: – 62% time to recover – 15% fear

Knowledge of contraception was limited DRC 2008: • Only 2 women had ever used contraception • Only 17 had ever heard of contraception DRC 2010: • No woman had ever used contraception • 52. 4% had heard of contraception / medicine to prevent or delay pregnancy • Only 24. 6% knew any specific methods Condoms, OCPs, Injection

Contraceptive Intentions • Intent to use contraception was high DRC 2008: • 89% would consider using contraception • Those who had been afraid they were going to die during their last birth were 3. 8 times more likely to intend to use or consider using contraception. (p=0. 049)

Contraceptive Counseling • Group contraception counseling • Slightly modified from post-partum contraceptive counseling sessions • Groups of 10 to 30 women • Twice monthly Available contraceptives: Rhythm beads/fertility awareness method, condoms, combined and progestin-only pills, progestin injection, contraceptive implant(Jadelle), non-hormonal IUD Provided free of charge by UNFPA Patient demonstrating cycle beads

Post-Counseling Contraceptive Knowledge Changes in Contraceptive Knowledge of modern birth control Knowledge of any specific methods ≥ 1 question correct for >50% of methods Precounseling 52. 4% 24. 6% 40% Postcounseling 97% 84% • After counseling: • Only 1 woman could not describe birth control • Average number of methods recalled = 5. 2 • Proportion who knew ≥ 5 methods : 2%→ 94%

Post-Counseling Contraceptive Knowledge “I would like to know about these medicines because if you conceive the first time you could die, the second time too… but if you have these medicines to prevent that then you could help someone, save their life. ”

Contraceptive Uptake • Amongst women discharged over the subsequent 3 months – 20% of study participants (5/25) and 3 additional women with fistula left with a modern contraceptive method

Future Directions • Study expansion currently underway to Panzi Hospital in Bukavu, South Kivu • Presenting findings to UNFPA and funder agencies to advocate for FP access • Working to develop regional systems for continued contraceptive access Onward to Bukavu

Research Development • New research committee and IRB at HEAL Africa • Clinical research training • Development and supervision of independent research projects - – Portable ultrasound use, prematurity outcomes, C/S DDI, delay in antenatal care,

Conclusions • Complex emergencies and conflict lead to destruction of the health care system and increased sexual violence which greatly affect women’s lives. • Genital fistula occurs when access to family planning and obstetrical care is limited. • Women with fistula are interested in reproductive control and birth spacing, and will use modern methods if made available.