Although cleft lip and palate deformities are one of the most common birth defects, that does not make living through childhood with one any easier. When we meet someone, the first thing we notice about them is their face: their eyes, nose and their smile. So, when a child has a large gap on their face, it is difficult not to notice. Because a cleft lip is so visible, children who do not have their clefts operated on when they are babies often must endure teasing, bullying and stigma attached to their appearance.

This was the case for Rafael, a FACES patient. At 2 years old he is probably too young to understand the stigma of his condition, but his caregiver, Corina Hidalgo, understands intimately what Rafael has been through.

Corina is not Rafael’s mother. She has four of her own children, but cares for Rafael as if he were her own. Rafael was born to a distant niece of Corina who was a teenager when she gave birth. The moment she saw Rafael after he was born, she wanted nothing to do with him because of his cleft lip.

“The same day he was born, she wanted to give him away,” explains Corina. “His mother was asking everyone if they wanted to take him.”

Corina, whose maternal instinct is obvious in the way she cradles Rafael, knew she had to step up with this child. She didn’t know what would become of the child so she told her niece she would take care of him. Corina and her husband incorporated Rafael into their own immediate family, raising him as their own son.

“No one wanted him because of his appearance,” says Corina. “I felt so bad that his mother was offering up this child, so of course I knew I would take care of him.”

Rafael’s transformation is truly remarkable before and after his surgery. Before his operation he had a wide gap in his lips, his teeth visible from the outside. After several hours in the operating room, Rafael’s lip is closed and he no longer has a cleft. The next morning he sits on a chair in the recovery room, enjoying the attention from nurses, doctors and passing families.

Within a matter of hours, the FACES surgeons were able to close Rafael’s open cleft lip. It is an operation that is relatively short, but absolutely life changing. Thanks to this operation, as well as the support of caring people like Corina, Rafael has a new chance at living a normal, stigma-free life.

“He looks amazing,” Corina whispers, eyes shining. “He is so cute. I don’t have words to say thank you. I feel so grateful, I just feel like crying.”

Rafael before his surgery.

Rafael after his surgery.

Corina, her husband and Rafael together after his surgery.

During our international trips to Peru, the days often get caught up in the details of the cleft surgeries: admitting, vitals, the surgery itself, medicines, recovery… While the surgery is an essential component in the treatment of cleft lip and palates, speech therapy is equally as important in comprehensive cleft care. After a cleft palate surgery, the normal sounds and patterns of speech must be learned which requires the help of a trained speech therapist. For truly comprehensive cleft care, surgery and speech therapy are both needed.

When a child has their palate closed at an early age, say 12 months, they often will develop normal speech without therapy because they haven’t started to talk or develop bad speech habits, like mispronunciation. If a child’s palate is closed later, say around age 3 or 4, they have already developed a number of abnormal productions of speech sounds.

“The older the child is, the more established these error patterns become,” explains FACES Speech Therapist Lance Tsugawa. “Just doing the surgery does not change the speech. You have to reestablish normal speaking patterns.”

To do the cleft lip and palate patient must begin speech therapy soon after surgery and continue, in many cases, for several years. It’s important to surgically repair the palate as early as possible in a child’s life. However, even at later ages, it’s possible to make very good progress with speech therapy.

“Any way we can help these children be understood is excellent,” says Vanderbilt Speech Pathologist Jennifer Craig, who is on her first trip with the FACES team. “Therapy helps reduce the child’s frustrations with communication, as well as the parent’s frustration.”

The problem for FACES is that their target demographic are medically isolated, indigent patients who have little or no access to even the most basic medical facilities. Additionally, explains Lance, “most developing nations have very little in the way of speech therapy resources. If they are available they are fee for service and are often performed by local therapists who do not have the specialty training needed. FACES is one of the few surgical foundations that offers speech therapy services after cleft repair and we are continuing to develop more effective systems for therapy delivery.”

For the past five years, FACES has been working on developing an easily replicable model for speech therapy post-cleft surgery utilizing Internet connectivity.

“Knowing that they are therapy candidates ahead of time is fantastic,” explains Jennifer. “With technology becoming more and more accessible, there are a lot of great opportunities for these kids to receive treatment sooner and more frequently from what they may have access to now. “

From left: Dr. Kristina Ruybalid and speech therapists Lance Tsugawa and Jennifer Craig provide a speech therapy consult in Lambayeque.

Vanderbilt Speech Pathologist Jennifer Craig provides a speech evaluation on a cleft palate patient in Peru. Jennifer and the FACES team will decide what kind of therapy is appropriate for the patient.

The FACES team evaluates a patient for speech therapy.

The process of bringing a child to the FACES screening clinics, into surgery, through recovery and speech therapy is very much a family affair. It takes the support of caring parents, siblings, neighbors and community members to successfully help a patient through the FACES process. Adin’s story shows how a team of caring parents and supporters is necessary to make the dream of surgery and normal speech a reality.

Adin is 3-years-old, has light brown skin and a shining personality. Whenever the FACES team sees him, in screening clinics, before surgery or during his post-operative healing, he is wrapped comfortably in the arms of his father, Fradin Guerrero. Fradin lives a difficult life as a rice, corn and lemon farmer in Piurra. But, no matter his circumstances, he would do anything for his son.

FACES operated on Adin’s cleft lip three years ago when he was a baby and on the January 2012 trip they closed his cleft palate. After Adin’s cleft lip surgery, he was anxious to have his son’s cleft palate closed as well, so he searched for local doctors. After careful consideration, he decided to wait for the FACES team to return because of the excellent experience he had with the team when Adin was a new born.

Adin traveled to Lambayeque to see the FACES team from a small village near Piurra called Canchake. Buses only travel between the two locales twice a week, so Fradin carefully planned out how he would travel to the hospital on time. The family made the journey by open-back transport truck.

“The trip was long and I tried my best to make sure my son was as comfortable as possible,” Fradin says.

Less than 24 hours after Adin’s cleft palate surgery he is awake and playing in the recovery ward, taking in the hustle and bustle of nurses and doctors rushing about.

“My son is a strong, healthy boy – very active. I’m so grateful for what the doctors have done for my child. I’d like to send one million thank yous,” Fradin says. He flashes a shy smile and you can see the striking resemblance between father and son.

Although Fradin spends long days working in the rice fields, he is excited that this surgery and subsequent speech therapy treatments will open up new horizons for his child.

“I wanted to have him operated on when he was young because soon he will start kindgergarten,” Fradin says. “I wanted to make sure he was ready for school.”

As the family gets ready to return to Canchake, Fradin strolls towards the exit but, at the last moment, turns and walks back to the FACES waiting area.

“I want to say ‘thank you’ again,” he says. “I am so grateful. I cannot thank you enough for what you’ve done for my child.”

Fradin and his son Adin, who received cleft lip surgery from FACES three years ago and cleft palate surgery from FACES this year.

Buenos noches from Lambayeque! Read below to see the updates our newsletter subscribers received today (also, if you haven’t already subscribed, make sure to sign up here):

“The FACES International Cleft Team has been hard at work here in Lambayeque, Peru. Currently the team is mid-way through their fourth day of surgeries and have completed 21 cleft lip and palate procedures. The FACES team, made up of 23 members (meet them all here ), is on a week long trip to northern Peru to operate on and correct cleft lip and palate deformities, as well as perform speech therapy consultations. Thus far, the trip has been going extremely well and all surgical procedures have been completed succesfully. The FACES team continues to work closely with their local partners including Belen Hospital where they work from in Peru and the Lambayeque Lions Club, who help identify, transport and feed patients and families while at the hospital.

The team has been having a great time working together and with the Belen Hospital staff. In addition to surgeries, the FACES speech therapists continue to perform speech consultations and evaluations. “I’ve been very happy with how the trip has been organized. We’ve been able to see patients when we needed to and see patients on time,” said FACES Speech Therapist Lance Tsugawa, who also speaks fluent Spanish. “I’ve also enjoyed interpreting for the rest of the staff. This year we have enough interpreters so we can meet everyone’s needs.”

From left: Dr. Kristina Ruybalid, Dr. Gerald Tanner, Dr. Tom Wang and Dr. Adam Terella in the operating room.

The team is looking forward to another day-and-a-half of surgeries at the hospital. On Friday night the whole team, along with partners from the Lions Club and Hospital Belen, will get together for a celebratory banquet.”

Also, we’ve been busy documenting this whole experience with photos, videos and stories. Make sure to check out some of our recent photos and albums here:

“Journey to Peru”
“FACES Surgical Trip Days 1+2”
“Rounds and Pre-Op (Day 3)”
“FACES Surgical Trip Day 4”

Dr. Tom Albert, FACES Founder and President, with Cecilia, President of the Lambayeque Lions Club.

The FACES operating rooms are busy places here in northern Peru, but the waiting areas may be even more bustling with activity, families and supporters of the FACES campaign. This morning we went into the waiting area to talk with some of the patients before their surgery. Meet one below:

Name: Hernan
Age: 5 years old
What does he do for fun?: “Futbol, of course!” he says.
Future career path: Professional soccer player.
Current feeling: Hernan says he is excited for his surgery. He is even more excited to take home one of the soccer balls FACES brought down to Peru for patients.

Hernan in the FACES waiting room passing time before his cleft palate surgery.

“How’s my baby?” Yovana Viera Silva asks nervously. Two hours earlier, her daughter Chalon was admitted into the FACES operating room to receive a cleft lip surgery from the team. Yovana and her husband wait in plastic chairs and each time a FACES team member, dressed in green and blue scrubs, leaves the OR she jumps up and asks again, “How is she? How is my baby?”

Chalon, who is only three months old, is Dr. Tom Wang and Dr. Adam Terella’s first case of the day. Inside the operating room they work smoothly with the rest of their FACES team: Dr. Gerald Tanner as anesthesiologist, Jackie Linstram as scrub technician and Gay Tanner as operating room circulator. Dr. Terella and Dr. Wang work together seamlessly and several hours later Chalon is woken up and carried to the post-operative recovery area by Dr. Tanner. Post-op nurses Janet Nash, Tracey Naylor and Shellee Ramirez make sure Chalon has enough oxygen, is hydrated and as comfortable as possible.

Finally, Yovana can come back to the recovery room to see her youngest daughter. She is apprehensive, worried about her daughter’s procedure, but anxious to get her scrubs on so she can be reunited with her child. She walks back and sees her daughter, tears come to her eyes and she cracks a smile.

“Me bebe!” she exclaims with arms out. Last time she saw her daughter she had a wide gap dividing the left and right sides of her upper lip, also known as a cleft. Less than two hours later, Chalon’s upper lip is together and looks normal. The only evidence is the small line of stitches that connect her upper lip to her nose.

“I am so happy and so excited to see her. Her lip looks so much better. Thank God!” says Yovana as she stares adoringly at her child in her arms.

Yovana, who is from San Martin (ten minutes away from Lambayeque), delivered Chalon three months earlier at Hospital Belen, where the FACES team works while in Peru. When her daughter was born with a cleft lip, one of the Hospital Belen doctors recommended she get in touch with FACES Foundation, as the group specializes in cleft lip and palate repair surgeries.

“Excellente,” says Yovana. “This experience with FACES has been excellent. I’ve seen such great team work. I thank you all for your big hearts, your kindness, your caring and your patience. I so much appreciate how all the doctors explained everything about this process from start to finish.”

Resting in her mother’s arms, Chalon hardly cries but is lulled into sleep by her mother’s cooing. When asked about her hopes for her daughter’s future, Yovana gazes down at her child and cracks a grin.

“Quiero que mi hija sea una gran doctora! – I want my baby to be a great doctor,” she says with a laugh.

Chalon before her cleft lip surgery.

Dr. Gerald Tanner takes Chalon into surgery. Her mother, Yovana, and her husband say goodbye for a few hours.

Dr. Adam Terella and Dr. Tom Wang during Chalon's surgery.

Yovana and her daughter, moments after she was reunited with her daughter after the cleft lip surgery.

Can you imagine traveling through rugged countryside, over bumpy road and spending two nights on a rickety bus just to receive medical care? It’s something many of us in the western world will never understand, for when we need medical attention, we simply drive our car to the nearest hospital, which usually is no further than 20 minutes away. Here in northern Peru, the reality is different. Families do have to travel for days to access medical facilities and medical care for themselves and for their children. Despite the effort it takes to do this, families are more than willing to travel this distance to better the lives of their children.

The FACES team sees patients who are locals from Lambayeque, but they also see patients who have traveled from regions deep in the Amazonas in far northern Peru near the border of Ecuador. During the course of the day’s surgeries, we spoke with some of the families whose child will receive surgery from the FACES team to get their perspective on the FACES Foundation experience.

The Cajo Family

Juan Bautista Cajo Sanchez sits under a slice of shade as the Peruvian sun beats down around him. His skin is tan and weathered, for he spends his days outside farming sugarcane on his land. Juan shifts a soccer ball back and forth between his hands, a solemn look of concern on his face. Sitting across from him is his wife, Gandi Gisella Cajo Bernilla, who sports a tight magenta t-shirt and long, flowing black hair. The Cajo is from Salas, Peru, which is a two-hour journey from Lambayeque.

At this very moment, as Juan and Gandi sit together under a sunny blue sky, their only child, a 2-year-old boy named Alejandro Joel Cajo Cajo, is in the FACES operating room, receiving a surgery to correct his cleft palate deformity. This is Alejandro’s second surgery from the FACES team: he received the first in 2010 to correct his cleft lip deformity.

“Of course, I’m nervous because I wonder if my baby is going to bleed from his mouth after surgery,” said Gandi.

“We know that this surgery is going to improve his speech,” explained Juan, as he looked down at the soccer ball in his hands. “We are sure that this surgery will give him a better life.”

At four in the morning, hours before the sun would break over the horizon, 21 members of the FACES team gathered at the Portland International Airport, bags in tow, ready to head to the southern hemisphere for the 2012 Surgical Campaign to Peru. A week prior, all members of the team gathered for a packing party, during which they divided and packed medical supplies, medicines and necessities to bring with them on the trip.

The airline journey went smoothly, with some members of the team flying to Lima through Atlanta and others through Houston. During a seven hour layover in the Lima airport, the team made themselves comfortable on benches to catch a few hours of sleep before the final leg of the journey: Lima to Chiclayo. FACES Foundation performs their surgical campaigns in Lambayeque, Peru, due the excellent infrastructure and connections they’ve set up over the past years. Lambayeque is a small town outside the major northern Peruvian city of Chiclayo.

After almost 24 hours in transit, the team wiped the sleep out of their eyes, picked their bags up in Chiclayo and headed straight to Lambayeque by bus. Members of the Lambayeque Lions Club, a FACES partnering organization, welcomed the team at the airport and helped transport everyone to their place of lodging, Hosteria San Roque.

Several hours of mid-day sleep powered the team up for their next mission: transport all the medical supplies to Belen Hospital, where they would be operating from. A fleet of three-wheeled moto taxis were stacked high with the medical bags and zipped over to the hospital. At Belen Hospital, the staff welcomed the FACES team and assisted with the unpacking and organizing process: each medicine, piece of equipment and surgical device needed to be put away correctly for a smooth start to surgeries the next morning.

As often happens on FACES surgical trips, there are unexpected and unplanned for patients needing surgery who show up at the last minute. Several new patients were screened by surgeons Drs. Tom Albert, Jessyka Lighthall, Adam Terella and Dana Smith.

To see photos from the journey to Peru, see our album on Facebook.

One of the major projects FACES has been working on over the past year is a collaborative effort with Cafe Femenino and Green Empowerment. This effort, called the San Antonio Clean Water Project, brought clean, running water to every home in the village of San Antonio. Additionally, each home received a new latrine, placed so that waste matter would not contaminate their water source. One of the main goals on our November/December Peru trip was to travel to San Antonio to view the completed project. The journey to San Antonio curves and winds through the northern Andes and spits out into the Amazon basin region. The FACES/Cafe Femenino crew made the initial journey from Chiclayo to Jaen by car, which took us about 8 hours. Jaen is a bustling trade town that is one of the last large outposts before the country becomes extremely rural and isolated. We spent the night in Jaen and headed for San Antonio early the next morning – the second leg of our journey took another 5 hours. Remember, we were traveling by hired car. Most residents of villages like San Antonio would need to take a bus, or walk parts of this journey if they needed supplies or medical assistance from the bigger towns and cities. The journey would be exponentially longer and more difficult. San Antonio is a village of about 100 families nestled on the side of lush, emerald green mountains. The people of San Antonio are coffee producers, which is why Cafe Femenino is involved. We received a fantastic welcome from the village residents – children had made signs to show their gratitude and express their thanks for the partnership between FACES/Cafe Femenino and the town. Speeches and welcomes were made by the town officials, Cafe Femenino representatives and Dr. Albert of FACES. After a lunch of fresh vegetables, rice and cuy (Andrean guinea pig) Dr. Albert headed to the medical post to screen several patients, some with cleft lip and palates and some with other medical issues. Dr. Albert confirmed that at least one of the patients screened in San Antonio will receive cleft lip and palate surgery in January 2012 from the FACES team on their visit to Chiclayo. The journey from San Antonio to Chiclayo is not easy, but with the help of our local network in Peru, we know that this absolutely possible, and will be a life changing week for this patient. In total, Dr. Albert screened five new patients in San Antonio. Following the screening clinic, we headed out to take a tour of the village and the newly installed water project. Each home in the village has clean, drinkable running water. The enormity of this change will benefit each and every resident of San Antonio for, as Dr. Albert likes to say, clean water is the key to a healthy life. Clean water will eliminate parasite and gastrointestinal problems for many, which highly decreases quality of life and can cause death, especially for children whose bodies are smaller. FACES is looking forward to gathering post-project data on gastrointestinal disease in San Antonio to assess the impact of this installation.

Dr. Albert of FACES, along with members of Cafe Femenino, stand with the community members of San Antonio village.

Dr. Albert enjoys a cup of San Antonio's clean water for himself!

The founder of San Antonio, the village that now has clean, running water in each home.

Children in San Antonio welcome FACES and Cafe Femenino.

Another busy day here in Peru! After a few cups of Cafe Femenino coffee, we headed straight for Belen Hospital, the facility where we preformed surgeries last year. We met with several doctors, nurses and administration staff about keeping the FACES-Belen partnership strong. Working with Belen Hospital has been an essential component of the local sustainability factor of the FACES model: we know that simply arriving with our own team of doctors and preforming surgery is not enough. We are aiming to be as integrated as possible in the local structure, as well as with the local people, so that our program can be truly sustainable in the long term.

In the afternoon we headed into Chiclayo to attend the Cafe Femenino health-promoter training for women. This training meeting is held every year for the women coffee producers who work with Cafe Femenino. The women, who are all strong leaders in their communities, receive health training which they bring back to their towns and villages. The topics of this year’s training included respiratory problems and gastrointestinal issues, such as diarrhea and parasites. Dr. List and Dr. Albert spoke with the women about preventative measures they can take to better the health of their communities and their children.

Dr. List takes questions from the Cafe Femenino women at the health-promoter training in Chiclayo.

Dr. Albert with one of the Cafe Femenino leaders.

FACES staff Leah Olson and Delia Delgado speak with Arlita about her experience growing Quinoa in rural Peru.