Dr. John van Aalst – Pediatric Plastic Surgeon, UNC Chapel Hill

The Palestinian Cleft Society in collaboration with surgeons from the United States hosted screening days on 11/26 in Jenin, 12/3 in Ramallah, and 12/4 in Hebron.  In total, approximately 400 patients were screened and close to 60 procedures were performed in less than 3 weeks.

5^th Annual Conference of the Palestinian Cleft Society (PCS) Al-Bireh, Palestine The theme for this year’s PCS Conference was “Partnerships:  Patients, Families and Cleft Practitioners.” We enjoyed an informative conference on the need for partnerships among Palestinians in the care of children with clefts.  Palestinian speakers were joined by supporting faculty from the United States. 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, Birzeit 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 that included feeding, coping strategies, and the need for social workers to provide holistic evaluation of patients and their families. Most importantly, patients and families shared personal stories about living with the stigma of clefts.

The conference was supported by a generous gift through SmileTrain.

Patient Screening in Jenin, Ramallah and Hebron PCS sponsored three screening sessions for Palestinian children with clefts: Jenin on November 26th; Ramallah on December 3^rd and Hebron on December 4^th.  Over 400 patients were evaluated, many of whom had clefts; additionally, patients with ear and nasal abnormalities, and facial burns were evaluated.

Surgery Schedule The surgery schedule in Jenin was from November 27^th until December 2^nd; the surgery schedule in Hebron was from December 5th until the 11^th.  During this time, 57 surgical cases were completed, 42 in Hebron and 15 in Jenin.  There were no immediate complications.  All of the patients had scheduled follow up with local surgeons scattered around the West Bank. Much of the follow up was conducted in the new PCS Center in the Al-Bireh Charitable Building.

Surgeon Training The group of surgeons who continued their training during the most recent work included Nasr Jafr (ENT, Jenin Government Hospital),  Wa’el Halaby (OMFS, Ramallah Government Hospital), Sayf Said (Plastic Surgery, Beit Sahour), Khalil Al Baba (ENT, Hebron Government Hospital), Jafar Ayesh (OMFS, Hebron).  These individuals largely performed surgery on their own, with on-going (but more distant) supervision by Drs. Libby Wilson and John van Aalst. All of these surgeons are capable of independently performing cleft care in Palestine.  They are all recognized as SmileTrain partners.

Basic Life Support Training An exciting part of the most recent trip was the emerging partnership between the Palestinian Cleft Society and Operation Smile. Three OP BLS trainers (Carolina Camacho, Jose Diaz, and Eric Nylander) taught sessions in Ramallah, Jenin, and Hebron. A total of 123 individuals were trained. 25 BLS trainers were prepared for future training sessions in Palestine.

Palestinian Cleft Society Receives Government Recognition PCS received approval from the Palestinian Ministry of Health as an official non-governmental organization (NGO).  This is a process that has taken nearly two years. In order to celebrate, the leadership of the group went to dinner at Ankar’s Restaurant in Ramallah; 24 individuals were in attendance.

Al-Bireh Charitable Society Building With recognition by the Palestinian government, PCS has officially opened a Cleft Center in Ramallah.  The location is at the Al–Bireh Charitable Society Building in Al-Bireh, Palestine.  The Center has been furnished through the generosity of George Rizek, a Ramallah businessman, and is open for patient visits every day of the week.

PCS Leadership The current leadership of PCS includes Moanad Aker (President), Hanin Al Sheikh (Vice President), Wa’el Halaby (Treasurer), and Sayf Said (Secretary).

Reham Zetawi is currently the new Cleft Center Coordinator.  She has been working with PCS for the past three months.  Welcome Reham.

Allison Dybdahl – Speech Pathologist, UCLA

I have wanted to go on a cleft palate mission for the past 5 years and was ecstatic that my dream was finally coming true! To be honest my expectations were quite high since this had been a dream for so long, but I must say the trip to the West Bank greatly exceeded my expectations!!! I had the opportunity to travel to Jenin, Jericho and Ramallah and loved the diversity of the rich farmland to the busy city streets. While there, I was able to forge relationships with 6 speech pathologists and begin training them in cleft palate speech evaluation and treatment. Along the way I was welcomed into many clinics, hospitals, centers and patients’ homes and of course at each stop I was graciously greeted with mint tea and a formal sit-down introduction. There were several days I had at least 5 cups of tea because I was greeted warmly by so many individuals! I was also able to participate in 2 cleft screening days where ENTs, plastic surgeons, nurses, orthodontists and speech pathologists worked tirelessly as a team to care for the palestinian children. I was richly rewarded by the stories I heard, the families I met and the doctors I worked with. I experienced such kindness and hospitality that I left feeling like family. There is still much more training and work to do, but the Palestinian Cleft Society is working hard to provide quality and comprehensive care for children with clefts. I look forward to continuing my relationship PCS and all the wonderful staff, specialists and families I was blessed to meet.

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.

Hala Borno – Graduate Researcher, UNC Chapel Hill

I am a 4^th 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 a patient’s 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.