Face to Face: The Craniofacial Program Portrait Project at CHOP

Face to Face: The Craniofacial Program Portrait Project is the first program of its kind in the United States. Studio Incamminati's artists, in partnership with The Craniofacial Program at The Children's Hospital of Philadelphia and the Edwin and Fannie Gray Hall Center for Human Appearance at the University of Pennsylvania, painted portraits of children and adolescents with craniofacial conditions to help them see themselves in a different light. Watch the documentary to learn more about the project.

Transcript

Face to Face: The Craniofacial Program Portrait Project at CHOP

Narrator:  Our perceptions of others are largely based on outward appearance. Our first impression of the human face, more than any other physical feature, will shape our opinions of those around us. Are they happy or sad; confident or insecure; untrustworthy or dependable? Ultimately how we're perceived will influence the outcome of our lives. The mission of the "face to face" project is to express the reality of the power of art and medicine to heal the body and nourish the soul. 

Studio Incamminati artists, in partnership with the Craniofacial Program at the Children's Hospital of Philadelphia, painted intimate portraits of children with craniofacial conditions to help them see themselves in a different light. The "face to face" project was born of a deep friendship and common passion for art and medicine between world renowned artist Nelson Shanks, founder of Studio Incamminati, School for Contemporary Realist Art, and Dr. Linton Whitaker, founder of the Craniofacial Program at The Children's Hospital of Philadelphia. 

In the world of art, Nelson Shanks is hailed as a true master and a penetrating interpreter of the human condition. His commissions include some of the most influential leaders of our time. 

In 2002, Nelson and his wife, Leona, founded Studio Incamminati in Philadelphia. For more than a decade, Studio Incamminati has provided a dynamic learning environment to produce highly skilled artists who call upon their abilities to create art with an unparalleled depth of mastery and meaning. 

Nelson Shanks:  This project was an experimental project in England. Some years ago my great friend Linton Whitaker brought this to my attention, in that we're constantly talking about aesthetics between the two of us, the plastic surgeon, the artist. And it finally evolved into discussions about how to go about actually realizing the painting of these children and the beneficial effects that it could have. 

Reed Willis:  Our daughter, Paige, was born on July 2, 2001, and she was diagnosed with Pfeiffer Syndrome.

Heather Willis:  We knew something was wrong from the doctor's reaction right away, and we were pretty devastated.

Reed Willis:  We really were struggling with how we were going to cope with such a comprehensive set of symptoms. Pfeiffer Syndrome is a series of issues you need to deal with 

Heather Willis:  We were really very frightened in the beginning. I really thought that we would lose her.

Alisyn Blake, Instructor:  I think what people should know when they look at the portrait that I did of Paige is that things are possible. She radiates that hope. She radiates a sense of life. That you need to take a chance and trust the people around you to become a better person, and she does that. She's trusted her parents, her doctors, and me as an artist. When you see a child that is struggling and be happy amidst all of the difficult things that they are going through, to me, that's beauty and I want to be able to capture that in my own work.

Reed Willis, Father:  We feel really blessed that The Children's Hospital was geared up for this–both as a medical team, and just from and emotional and support standpoint. It really has been the right place to be.

Heather Willis, Mother:  Right. And Dr. Bartlett made her beautiful. I have to say that he didn't just fix her, he made her beautiful. I'm going to cry again, I'm sorry.

Reed Willis, Father:  She's not an angry child. She's not bitter. She knows everybody is different, and she has a good attitude about life.

Heather Willis, Mother:   She's accepted who she is, and she has a good attitude about herself that really empowers her to move forward. 

Linton Whitaker, MD:  In the late 60s when we were operating on children with clefts, cleft lip, cleft palate, and other problems around the face. But there seemed to be nothing, and there was nothing that could be done about the other more major problems that involved the entire face. 

After finishing my training in June of 1971, I had the good fortune to attend the first conference given by Paul Tessier [MD], the person who started this whole field from Paris, France, and it was the most astounding thing I'd ever seen. And so I said, that's it, that's the answer to these problems that I've been seeing. And so, we were one of the first in the country – in the United States – to start the program. CHOP is certainly a leader in the treatment of craniofacial problems. Through the coordinated efforts of a multispecialty clinic, the in-hospital care, I know at each step CHOP is very inclusive and comprehensive in dealing with the psychosocial aspects of the family as it relates to the patient's care.

When a patient is first seen, many times I have seen families really kind of staggered by this information of what needs to be done. Physically, there can be distinct problems of any of the functional parts of the face: the eyes, the nose, breathing, mouth, chewing. But that generally is not the most important problem. Most important problem is the psychological aspect of it, and the desire to look normal, or as normal as possible. 

Emmit, Father:  Ian was born on June 15, 2001. Within a couple of days we learned that at Pennsylvania Hospital where he was born, they suspected he had Moebius syndrome, and he was transferred to Children's Hospital where they confirmed that diagnosis. Moebius syndrome is the paralysis of various craniofacial nerves. It manifests itself in an inability to smile as most people would, and his eyes don't move laterally.

Joseph Dolderer, Instructor:  First time I met Ian I was very nervous to meet him. I had a certain expectation of who Ian was going to be. Ian walked into the room with his mother and father and his brother, Andrew, and immediately changed my perception of who he was going to be. He turned out to be very confident, very intelligent, very well read. A little intimidating for me, having read The Iliad and Odyssey, and he's only 11 years old. I felt the challenge was going to be how to get into Ian's mindset. 

When he first got up and sat down and started posing for me, it was hard to tell if Ian was happy or irritated. I'm sure he didn't like the idea of sitting for hours at a time. But after really getting to know him, I picked up on his expressions. The more time I spent with Ian, the more I felt like I really knew who he was. What interested me so much in the "Face to Face" program was not so much to do a portrait of somebody with a facial irregularity, but to paint the soul of the person–the individual. Here at Incamminati we're trained to start with a blank canvas. We really pour our energy into those first brush strokes. Studio Incamminati gave me tools to be able to work from life, which distinguishes it from many art schools. And that's one of advantages to working from life is getting to know the person. Hopefully at the end that will come through the final painting. 

Emmit, Father:  Ian's Chinese middle name means perseverance, and he's had to go through a lot, and it's clearly paying off. It's more than we wish he had to go through but we're very glad that he has the care that he needs, and that he has the opportunity to get the best out of many, many skills that he has. 

Dawn, Mother: And he's funny. 

Emmit, Father: And he's funny; he is funny. 

David Sarwer, PhD:  The psychological aspects of appearance are critically important. The initial beliefs from the 1950s and the 1960s were that our appearance really didn't matter very much. And, yet, since that time, we've had this body of research that has told us that our appearance influences our daily lives in a countless number of ways, and we see this experience across the lifespan.

Scott Bartlett, MD:  When a child is brought to us as an infant with a craniofacial deformity, we have to look at that child not only and look at their immediate needs, but we have to look at their long term needs. Our goal is really to get them through childhood and adolescence so that they can become and integrate in society when they graduate from our program. That they cannot always look around and think, "Is somebody looking at me, or noticing me, or judging me by my appearance?" And for many of our children that is a reality. And I'm confident that we can do that through the vast majority of our patients we see now in infancy. 

Keith Louis, Father:  Isaiah Louis was born June 19, 2004. Treacher Collins Syndrome is a facial deformity. It can cause partial hair loss, partial vision loss. I have a family genetics of Treacher Collins syndrome. I grew up with the same condition that my son has. Teaching my son about it, he has to have a different attitude about growing up. So I'm trying to teach my son that you have to stay up and be positive and be who you are, Treacher Collins or not. 

Kerry Dunn, Instructor:  The first time I met them, Isaiah and his dad, Keith, came in, I kind of joked in that first meeting we all sort of sat down and were facing each other. We got three guys who don't talk very much. Yeah, there wasn't a whole a lot to talk about at first even though we were trying. I did the best I could. I brought some toys with me, and I gave them to Isaiah. And I think both he and his dad appreciated that. 

With Isaiah, what impressed me was just how normal of a kid he is. And you can see that he had has a really great rapport with his dad. Seeing the family dynamics was really encouraging. The first time his whole family came in. So it was Isaiah, his dad, his mom, and his younger sister. And it was kind of interesting because you know his dad has the same condition, and so does his younger sister. Looking past the facial condition and seeing him for who he truly is is the job of the artist. You know, I certainly want to incorporate a positive outlook on him. So having him kind of looking up and off and into the future in the painting certainly signifies that. I think it's really about seeing the best in him. 

Studio Incamminati is definitely one of the top traditional painting schools in the world, really. It's a school. It's almost like a second family. We're small, but it's a place for people who are all interested in the same endeavor. We come together five, six, seven days a week, and we study, we train.

We're studying under this master painter. It's also a place where we're learning from each other. And we're learning these very traditional skills so that we can go out in the world and paint what we see around us to create paintings that have a very high level of craft. 

Teresa Louis, Mother:  He is faced with many challenges, but he's done a great job with Dad's help, my help. I wasn't born with Treacher Collins Syndrome, but learning about it through Children's Hospital, I feel more comfortable teaching Isaiah what I do know and helping him to be able to just enjoy life, every day. He's getting into art. Ever since we've started this process with the portrait, he's very excited about art now. 

Keith Louis, Father:  He's taking this experience, he's taking it as an adventure, just expanding with it. 

Teresa Louis, Mother:  He's excited. He's telling everybody. 

Canice Crerand, PhD:  When anyone has a facial difference, they often fear other people looking at them. When a child is a sitting for a portrait, an artist has to closely examine their face and their body and who they are. And the difference is that the artist is looking to capture who they are. The difference is really put into context, and the spirit and the soul of the child is able to shine through. 

Casey Gore, Mother:  Bryttani Gore was born September 29, 1998, with multiple craniofacial anomalies. When we first had Bryttani, there was a lot of uncertainty. I remember thinking, well, this is what I need to deal with. I need to step up. This is real. For whatever reason, I'm being given this really special baby with a special man, we have our special family. And I guess that's when the reality sunk in that you're a mom, a wife, this is what needs to be done, and you just need to roll with it. 

Leona Shanks, Co-Founder:  Life is a work in progress, and just like our painting, we as individuals develop throughout life and it's just absolutely fascinating to watch these children develop over time. My little girl, Bryttani, has said she wants to be a public speaker, she wants to tell stories, her stories, she wants to help people and teach about life's experiences through her own personal experience. She is so positive and she feels so blessed. 

Casey Gore, Mother:  Bryttani is proof that inner beauty overrides everything else. The "Face to Face" project has been a once in a lifetime opportunity for all of us. It's an experience that Bryttani is going to take with her for the rest of her life.

Linton Whitaker, MD:   The children felt that the artists were truly interested in them as a person. The idea that the world sees them as a person of value, I think, is very meaningful. 

Canice Crerand, PhD:  The great success of the portrait project is that when people view the portraits, that they would be able to see beyond the difference in the child's face, and to really learn something about what they really hope to accomplish with their lives, and that they are a person of value, of beauty, and of great worth. 

Scott Bartlett, MD:  The most beautiful thing about the project is what one of our patients have already told us that, you know, they never thought of themselves as being portrait worthy. Only beautiful people, only successful people, only heroes have their portraits painted. But for someone to actually asks them, "Can I paint a picture of you?" It's just an incredible thing that this portrait project has brought to those children. 

David Sarwer, PhD:   Art can really play a healing role. The experience for all of us who have worked on the "Face to Face" project, the families, the artists from Studio Incamminati, and the medical professionals from The Children's Hospital of Philadelphia has been nothing short of inspiring. This project was designed to educate people about craniofacial conditions and the challenges that children and families face, as well as to remind each of us about the real psychological issues that we all face related to our appearance, to share this powerful story, not just locally, but to a larger audience as well. 

I really hope that we're in a position where we can continue the project in the future. Doing so will allow us to have more children and more artists participate. As we strive to communicate that just because someone looks different on the outside doesn't mean that inside they are a fundamentally different person. In reality they share the same interests, and goals, and dreams as all of us.

Related Centers and Programs: Craniofacial Program, Division of Plastic and Reconstructive Surgery