Carolina Camacho - Operation Smile Educations Manager

Working in partnership with the Palestinian Cleft Society, Operation Smile conducted an American Heart Association’s (AHA) Basic Life Support (BLS) training program at the Government Hospitals in Ramallah, Jenin and Hebron. This course was developed to provide healthcare professionals with the ability to recognize several life-threatening emergencies, provide Cardiac Pulmonary Resuscitation, use an Automatic External Defibrillator, and relieve choking in a safe, timely and effective manner. Training was conducted between December 2^nd and December 10^th and provided instruction for 123 local doctors and nurses, of which 23 were certified as instructors and 100 as providers. The new instructors and the members of Juzoor, a local organization that conducts life support training, are committed to future implementation of AHA certified courses. Conversations to bring Pediatric Advance Life Support (PALS) in May 2012 have already started between the partners.

Operation Smile is a humanitarian nonprofit organization that provides effective reconstructive surgery for children born with facial deformities such as cleft lip and cleft palate. In addition to its surgical work, the organization also provides training to local volunteers to ensure that every child receives quality care every time and everywhere they receive surgery. The program just completed in Palestine exemplifies the organization’s commitment towards sustainability at the local level.

A researcher's note from the December 2011 mission

I am a 4th year medical student at the University of North Carolina at Chapel Hill interested in public health and Palestine. I have been developing a congenital anomalies database for the past several months in order to meet three primary goals: (1) to determine the incidence and prevalence of congenital anomalies in the West Bank and Gaza; (2) to help understand the causes of such anomalies in the Palestinian population; and (3) to lay the foundation for a nation-wide health care registry.

During the December 2011 Palestinian Cleft Society mission, I administered this congenital anomalies database for the first time. This pilot involved interviewing the parents of patients undergoing surgeries by the team. The patients were primarily children with congenital anomalies, such as cleft lip and palate, as well as microtia. Many of the children had speech difficulties and some were syndromic, having an array of other major health issues. My pilot will hopefully help me assess whether or not I am collecting quality data. I intend to maximize the quality of the data I collect in order draw accurate conclusions regarding congenital anomalies in the West Bank and Gaza.

During my time in the West Bank, I interviewed the parents of patients using a 500-question survey. I conducted these interviews in Jenin and Hebron Governmental Hospitals. I asked questions regarding the health status of the patient and his or her family, and learned a great deal about the socio-cultural elements that affect health and health care access. In the setting of military occupation, I learned that many of the patients struggle to receive care for the treatment of complex conditions such as cleft lip and palate. For example, prior to the founding of the Palestinian Cleft Society (PCS), no Palestinian providers were trained to treat clefts. As a result, patients had to travel to surrounding countries in order to receive essential care or wait for foreign surgical teams to provide this care. Those patients who were unable to afford the expense of traveling for care often lived with their disfiguring conditions. PCS is helping close a gap in health care in the West Bank, but there are still many vast gaps that need attention. Yet many of these gaps are a consequence of the occupation, which limits resources available to Palestinians and restricts patient ability to travel.

My interviews illuminated many environmental factors that may play a role in the development of congenital anomalies. When querying parents about toxin exposure during pregnancy, several mothers admitted to major gas inhalation during pregnancy as a result of political conflict. Additionally, many of the parents live in villages or refugee camps, which largely rely on rain as their primary water source. I also found that amenities such as heating and air conditioning, which are present everywhere in the United States, were infrequent within the sample of parents I interviewed. While a lot of these environmental concerns are not surprising, I believe that it is important to document them in order to study whether or not they affect the health status of a pregnant Mother’s unborn child.

While I was able to conduct 47 interviews and to train local staff to conduct interviews, I found that my time in Palestine flew by too fast. I was overwhelmed by the warmth and kindness of the people I encountered. I was repeatedly humbled by the commitment shown by the Palestinians working with children with congenital anomalies. The health care providers worked long-days and showed tremendous compassion towards their patients. The team worked together to perform over fifty surgeries in two and a half weeks. This meant that the surgeons were in the operating room for about twelve hours a day and the speech pathologists were working with patients throughout that time. All of the providers worked hard with the shared goal of providing essential care for Palestinian children in need.

During my time in Palestine I learned most from the people around me and I look forward to my return in May.

Screening in Jenin and Ramallah

PCS has sponsored three screening sessions for Palestinians with clefts: in Jenin on November 26th; in Ramallah on December 3rd, and in Hebron on December 4th (See attached pictures). Over 200 patients with clefts were evaluated. In addition, many patients with ear and nasal abnormalities, and facial burns were seen and evaluated.
Our surgery schedule in Hebron begins on December 5, 2011.
We’ll continue to give you updates.

Palestine Cleft Society Conference in Ramallah

The theme for this year’s conference was “Partnerships: Patients, Families and Cleft Practitioners.” We enjoyed an informative conference on the need for partnerships in among Palestinians in the care of children with clefts. Palestinian speakers were joined by supporting faculty from the United States (See Syllabus).Topics ranged from the genetics of clefting to the need for partnering with the Palestinian Ministry of Health. Palestinian surgeons, nurses, physiotherapists, speech pathologists, dentists and orthodontists participated. Participants also came from several local universities, including Al Quds University, Bir Zeit University, An Najah University, and The Arab American University of Jenin.

Speech and Language Pathologists provided the basics of speech evaluation in patients with clefts. Surgeons emphasized the importance of partnerships with other disciplines. Researchers discussed the development of a database. Geneticists gave useful insight on novel mutations among Palestinians that cause syndromic clefting. Nurses discussed important aspects of care including feeding, coping strategies, and the need for social worker holistic evaluation of patients and their families. But most importantly, patients and families shared personal stories about living with the stigma of clefts.

Jenin 2011

The team arrived in Palestine on Friday November 25th and began screening patients at Jenin Government Hospital on Saturday November 26th. While 3-4 surgeries of cleft lip and palate patients have been taking place daily, I have been conducting hour long interviews with the parents of each patient. These interviews involve gathering extensive information that will hopefully allow us determine the cause of this condition. This work is just the beginning of a long process.

A Call to Action - Donate to the Baby Adam Fund Today!

Adam Paulraj was born in India with a condition called Bartsocas-Papas Syndrome. This genetic syndrome causes severe craniofacial, limb, and genital abnormalities.


To have a meaningful life with this syndrome, Baby Adam will require multiple surgical procedures and long-term, advanced medical care. In order to receive this essential care, Baby Adam needs your help. UNC Hospitals will be providing care for Baby Adam. The Palestinian Cleft Society is supporting UNC’s efforts.

You too can help Baby Adam receive the care he needs!

Send checks for The Baby Adam Fund to:
The Medical Foundation of North Carolina
880 MLK Jr. Boulevard, CB#7565
Chapel Hill, NC 27514-2600

All donations are tax-deductible.
http://palestiniancleftsociety.com/ourwork/babyadam

Upcoming Conference Dec 2, 2011

Palestinian Cleft Society 5th Annual Conference
December 2, 2011 Partnerships: Patients, Families and Cleft Practitioners – Red Crescent Society Building, Al Bireh, Palestine 7:30 AM – 4:00 PM

Sponsored by the Palestinian Cleft Society; Funded by SmileTrain; In Partnership with Operation Smile and Resurge

Schedule of Events:

7:30 – 8:00 AM: Breakfast

8:00 – 8:15 AM: Opening Remarks Moanad Aker, President PCS/Moderator; Hanin Al-Sheikh, Vice President, PCS

8:15 – 8:30 AM: Wa’el Halaby, DMD: “The Value of Volunteering: A PCS Member’s Experience in War-torn Libya”

8:30 – 8:45 AM: Rushdi Amr, DMD: “Building Partnership with Operation Smile”

8:45 – 9:00 AM: Hanin Al-Sheikh, SLP: “Building Community with other Volunteer and Charitable Organizations”

9:00 – 9:15 AM: Moanad Aker, DDS: “Partnerships with Palestinian Institutions”

9:15 – 9:30 AM: Reham Zetawi, BA: “Partnering with Families of Children with Clefts”

9:30 – 9:45 AM: Operation Smile Basic Life Support Course Leaders: “Partnering Through Training Health Care Practitioners in Palestinian Hospitals”

9:45 – 10:00 AM: Libby Wilson, MD: “Pitfalls to Partnerships on Cleft Teams”

10:00 – 10:15 AM: Hashem Shahine, PhD: “Partnerships in Genetics Research: Helping Families Understand the Causes of Clefting”

10:15 – 10:30 AM: Emad Abdel Khalek Hussein, DDS: “Clinical Cleft Research: A Key to Partnerships?”

10:30 – 11:00 AM: Break

10:45 – 11:00 AM: Sayf Saed, MD: “Pierre Robin Sequence: A Case Report”

11:00 – 11:15 AM: Khalil Albaba, MD: “The Role of ENT in Patients with Clefts”

11:15 – 11:30 AM: Alison Dybdal, SLP: “Speech Assessment After Palate Repair”

11:30 – 11:45 AM: Cindy van Aalst, RN: “The Importance of Nursing in Cleft Care”

11:45 AM – 12:00 PM: Emad Abdel Khaled Hussein, DDS: “Clefting Rates in Palestine: The Makassad Experience”

12:15 – 12:30 PM: John van Aalst, MD: “Complications after Cleft Surgery”

12:30 – 12:45 PM: Hala Borno, BS: “Development of a Registry to Follow Congenital Anomalies in Palestine”

12:45 – 1:00 PM: Hashem Sahine, PhD: “Syndromic Cleft Palate in a Consanguineous Palestinian Family”

1:00 – 1:30 PM: Family Cases: Experience of Families with Children who have Clefts: “Finding Cleft Care in Palestine”

2:00 – 3:00 PM: Lunch

4 PM: Adjourn for Fundraising Event

6 – 9 PM: Red Crescent Society, Al Bireh, Palestine

Dinner: Traditional Palestinian Dancing/Singing

Faculty: Moanad Aker, DDS, Jerusalem, Palestine (President, PCS); Khalil Al Baba, MD: ENT Department, Hebron Government Hospital; Hanin Al-Sheikh, SLP, Ramallah Palestine (Vice President, PCS); Rushdi Amr, DDS: Hebron, Palestine; Jafar Ayesh: OMFS, Hebron, Palestine; Hala Borno, BS, 4th year Medical Student, UNC; Wa’el Halaby, OMFS, Ramallah, Palestine (Secretary, PCS); Emad Abdel Khalek, DDS (Chair of Research Committee, PCS); Nasr Jafr, MD: ENT, Jenin Government Hospital, Jenin, Palestine, Operation Smile Basic Life Support Course Leaders; Sayf Saed MD: Plastic Surgeon, Beit Sahour, Palestine (Treasurer, PCS); Alison Dybdal, SLP: Los Angeles, CA, USA; Cindy van Aalst, RN: Chapel Hill, NC, USA; John van Aalst, MD: Plastic Surgeon, Chapel Hill, NC, USA; Libby Wilson, MD: Plastic Surgeon, Los Angeles, CA, USA

Upcoming Events

The Palestinian Cleft Society is excited about its upcoming events.

Meetings -

Palestinian Cleft Society 5th Annual Conference
December 2, 2011 – Ramallah
Come join us for a series of talks on cleft care in Palestine.

Surgical Trips -

November 24, 2011 – December 12, 2011
The Palestinian Cleft Society in collaboration with surgeons from the United States will host screening days on 11/26 in Jenin, 12/3 in Ramallah, and 12/4 in Hebron. If you or your child is in need of care for a craniofacial anomaly, please attend a screening.

October 17th Fundraiser

Live performance at the UNC Furlow Fund raiser on October 17th by UNC medical students.

Inaugural Fall Dinner Fundraiser

This event would not have been possible without our great volunteers!

On the night of October 17th 2011 at the University of North Carolina at Chapel Hill, the Furlow Fund hosted its inaugural fund raising dinner event for the Palestinian Cleft Society (PCS). 150 people from all over the greater Chapel Hill community came together for a night of music, food, celebration, and education. After a touching brief documentary on cleft care in Palestine and musical performances by UNC medical students and oudist Naji Halal, attendees learned about and celebrated for the sake of PCS’ important work in Palestine.

The founder of the Furlow Fund, Dr. van Aalst, spoke about the history of PCS and how the money raised will be used. Professor Carl Ernst, leader of the Carolina Middle East Center talked about the importance of building stronger partnerships between the UNC community and the Middle East. Medical student organizer, Hala Borno, acknowledged how important PCS is for her very own public health research and thanked the community for their support.

While the event did raise funds for cleft care in Palestine through ticket sales, donations, and silent auction proceeds; the community awareness established through the event was priceless. The UNC event planning team looks forward to hosting next year’s fall event.


This event would not have been possible without our volunteers.

USPSTF advises agaisnt PSA

Up to this point the USPSTF guidelines asserted that there was insufficient evidence to advise against or for routinely getting the PSA, or screening for prostate cancer. However now, the USPSTF advises against routine screening. Studies have shown that screening does not save lives and ultimately leads to over-treatment. These recommendations apply to healthy men without symptoms.

http://www.nytimes.com/2011/10/07/health/07prostate.html?_r=1&hp

more on NCD global health platform

LIVESTRONG has an excellent platform to consider when approaching the global health burden of NCDs. The core elements of their platform are defined as (1) education and awareness, (2) prevention and risk reduction, (3) screening and early detection, (4) diagnostics and staging, (5) treatment, (6) surveillance and monitoring, (7) treatment. Each core element creates an opportunity for improving access and reducing global burden.

global health platforms on NCDs

Per a Livestrong briefing, 80% percent of noncommunicable diseases (NCDs) occur in low- and middle-income countries. The briefing reports that presently, cancer alone, costs $895 billion annually, with a global burden that has the potential to limit productivity and economic growth on a national, regional, and international level. Many existing global health platforms function to prevent, treat, and eradicate communicable diseases. While chronic conditions that dramatically affect life expectancy are neglected. The global health conversation is shifting, however, to consider the ways in which existing global health platforms can be employed towards addressing the burden of NCDs worldwide.

At a Global Health Council discussion panel held today in New York City, various leaders in global health spoke about the importance of leveraging current global health platforms. Yet they persistently cautioned that not all platforms are translatable in the setting of NCDs. Yet I found one persistent theme, and that is the importance of primary care, continuity of care, and preventative medicine in reducing this burden. And these methods are of course connected to the burden of communicable diseases. If systems are in place to promote healthy living, vaccinations, and continuous care, both NCDs and infectious diseases can be addressed. The solution is primary care. Now the barrier is implementation - building infrastructure, training healthcare providers, and equity in access - real barriers to care that undoubtedly exist in both developing and developed countries.

10 years later

The events that occurred 10 years ago on 9/11 reverberated in profound ways across the world. PCS sends its thoughts and prayers to anyone, anywhere who has been touched by the tragedy of violence.

Important Day

Today was an important day because a Palestinian surgeon with PCS preformed a cleft lip repair on a child in need of medical attention. Today, as a result of a project aimed at promoting sustainability and self-sufficiency, one Palestinian child was able to receive the care that she needed. PCS is an organization that operates under the principle of creating a long-lasting solution to the dilemma of Cleft Care in Palestine. Today was a major indicator that we are well on our way! Thanks to your support we can continue to address this important health care need!

why do refugee camps exist today?

A nytimes article on refugee camps and the price of dignity explores the history of refugee camps while also accounting for their modern day existence. The article reads that "The camp model began at the end of World War II as a way to provide temporary housing for the displaced. “Over the years, camps have become the standard response,” Mr. Crisp said. “But they should be a last resort.”"

Refugee camps place a tremendous burden on host countries which agree to this burden under the premise that these camps are isolated and placed far away from society. But of course, placing large communities in isolation, free of resources and opportunity ensures a static state. Yet there are other options. The article reads that "Iraqi refugees managed to avoid being settled in camps because many had left for Amman and Damascus before camps were even considered. Nor did the United States want to call attention to the fact that 40 percent of Iraq’s professional class had fled." This article suggests that while resettlement is not a perfect solution, it is a better option.

http://opinionator.blogs.nytimes.com/2011/09/01/for-refugees-the-price-of-dignity/?ref=opinion

The Lancet Series

Health in the Occupied Palestinian Territory - Lancet

"Hope for improving health and quality of life of Palestinians will exist only once people recognize that the structural and political conditions that they endure in the occupied Palestinian territory are the key determinants of population health", states the first report in the Series.

This Series on the health status of 3·8 million people living in the occupied Palestinian territory details one of the most important flashpoints not only in Middle East politics, but for global security. The Lancet report examines aspects of the Palestinian health predicament: health services; maternal and child health; cardiovascular diseases; diabetes and cancer; health and human security; and the future of the healthcare system. The report has been written by a team of health scientists in the occupied Palestinian territory, together with international colleagues from WHO, associated UN agencies, and academic institutions in the USA, UK, Norway, and France.

http://www.thelancet.com/series/health-in-the-occupied-palestinian-territory

The Palestinian Cleft Society is a group of Palestinian health care practitioners committed to caring for children with clefts and other craniofacial abnormalities. These practitioners primarily live and work in Palestine, but are supported by practitioners from all over the world. Our common goal is to build the infrastructure required to provide world-class care to Palestinian children with any craniofacial anomaly.

PCS is proud to partner with both SmileTrain, Operation Smile, and the Furlow Fund at the University of North Carolina at Chapel Hill.

Together we can make a difference in the lives of multiple Palestinian children.

pcs goals in the setting of limited resources

Homes inaccessible due to rundown infrastructure, people suffer secondary to limited supplies and a lack of electricity. We are so fortunate that such complexities in daily life are not the norm for us but rather consequences of severe natural forces that challenge our accepted comforts. Yet the reality is that much of the world's population confronts such challenges routinely and of course this has implications on health care quality and access, especially for the most vulnerable populations, women and children. In the context of West Bank and Gaza, where resources are limited and travel is restricted secondary to military-run checkpoints, PCS aims to serve as part of the solution - working hard to provide sustainable and continuous care for children and adults who have complex health conditions.

natural disasters and preparation

In NYC, I stood in a seemingly endless grocery store line in preparation for hurricane Irene. My attempt to buy a flashlight at local convenient stores was futile. Supplies are running out. The city's entire public transportation system closed for the first time in history at noon in order for the carts to be stored safely away from the storm's strong winds. Of course this hurricane poses countless inconveniences and perhaps many unknown dangers, but at least I am living in a context where I have the resources to get by. At times like these, its important to think about those who don't have the protection imbued by urban living and resources.

Furlow Event Dinner Fundraiser - October 17th!

Please purchase your tickets online or make a donation to help support essential surgical care for Palestinian children!

https://medicalfoundationofnc.org/uncfurlowfund

emerging regional public health concerns

While ignoring the orientalist title of this article, I went on to learn about an emerging public health concern in the Middle East. Many of us interested in global health, particularly in the area of infectious disease, have seen the famous HIV prevalence map which shows North Africa to hold a low HIV burden. Researchers have found that perhaps the prevalence of this disease is under-reported and overlooked in the context of North Africa and the Middle East. Indeed, researchers estimate that 5% of men who have sex with men within the region are infected by HIV, and this number will only grow if this population is left unidentified and under-treated.

http://www.npr.org/blogs/health/2011/08/10/139395327/hiv-in-the-middle-east-and-north-africa-hidden-behind-a-veil

Essential Care

Craniofacial anomalies like cleft lip or palate can be life threatening, affecting basic life functions like feeding and breathing. The incidence of these anomalies is much higher in developing countries, in areas where resources are limited and access to care is scarce. As a result, it's that much more important that support is directed towards developing needed infrastructure. These children deserve a chance to live full lives. If you would like to know how you can help. Please contact me at hala_borno@med.unc.edu

UNHCR launches global campaign for the stateless millions

"GENEVA, August 25 (UNHCR) – The UN refugee agency today launches a global campaign to promote action against statelessness, a scourge for millions of people worldwide.

"These people are in desperate need of help because they live in a nightmarish legal limbo," High Commissioner for Refugees António Guterres said. "This makes them some of the most excluded people in the world. Apart from the misery caused to the people themselves, the effect of marginalizing whole groups of people across generations creates great stress in the societies they live in and is sometimes a source of conflict," he added in a message to launch the campaign, which comes ahead of the 50th anniversary on Tuesday of the 1961 Convention on the Reduction of Statelessness." http://www.unhcr.org/4e54f6b36.html

Natural Disaster and Crisis: Lessons Learned about Cleft and Craniofacial Care from Hurricane Katrina and the West Bank.

"Cleft care is generally characterized by staged, carefully timed surgeries and long-term, team-centered follow-up. Acute and chronic crises can wreak havoc on the comprehensive team care required by children with craniofacial anomalies. Additionally, there is evidence that crises, including natural disasters and chronic disruptions, such as political turmoil and poverty, can lead to an increased incidence of craniofacial anomalies. The purpose of this article is to delineate the impact of acute and chronic crises on cleft care. Hurricane Katrina in New Orleans, Louisiana, U.S., in 2005, resulted in an acute crisis that temporarily disrupted the infrastructure necessary to deliver cleft care; chronic turmoil in the West Bank/Palestine, has resulted in an absence of infrastructure to deliver cleft care. Through these central examples, this paper will illustrate--through the prism of cleft-care--the need for (1) Disaster preparedness for acute crises, (2) Changing needs following acute crises that may lead to persistent chronic disruption, and (3) Emphasize the need for baseline and long-term monitoring of population changes after a disaster has disrupted a health care delivery system."

Cleft Palate Craniofac J. 2011 Jan 29. [Epub ahead of print]

High unemployment blights Palestinian lives, despite economic growth – UN

"The report also contends that the growth recorded in 2010 is not a sign of sustainable recovery, but rather reflects an economy rebounding from a low base.

It shows that the growth has come after a decade-long economic regression and continuing de-industrialization. Concerns about the sustainability of growth arise from observed technological regression and the fact that the 2010 growth relied on substantial donor aid and public expenditure.

Private-sector revival is still constrained by the construction of the separation barrier, movement and access restrictions, limited access to external markets for the export of goods or the import of production inputs, and a much reduced productive and natural resource base."

http://www.un.org/apps/news/story.asp?NewsID=39373&Cr=palestin&Cr1

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Surgical Care in the West Bank

Image 1 shows the surgical team in the West Bank.
Image 2 shows a Palestinian child before and after surgical care from the Palestinian Cleft Society.

PCS sponsored by the Furlow Fund

The Palestinian Cleft Society (PCS) was founded in 2007 to provide free care for Palestinian children with cleft lip and palate, and other congenital craniofacial anomalies. The Cleft Society is made up of Palestinian surgeons, speech therapists, dentists, orthodontists, geneticists, and pediatricians, as well as foreign cleft practitioners who have provided support to the Palestinian practitioners. To date, the Palestinian Cleft Society, in conjunction with the Furlow Fund, has provided free surgery and services to over 600 Palestinian children with craniofacial anomalies.

The Furlow Fund was founded in 2008 and is named after Dr. Leonard Furlow, an internationally recognized craniofacial surgeon, who trained in Plastic Surgery at the University of North Carolina at Chapel Hill. All of the money raised by the Furlow Fund will be used to provide free surgery for Palestinian children with craniofacial problems; this includes paying for surgical equipment and supplies, medicines, and feeding bottles, for the UNC-sponsored biannual surgical trips; the money will also provide resources for Palestinian practitioners to further their training.