Adventures of Norah: Let’s Talk About Cleft

By Sasha A. Cooper;
Illustrated by Wafiq Sehat

This book focus on children with cleft lip and palate. The book explains – with love –  what a cleft lip and palate is. It also illustrates a bit about the journey of a cleft child.

These Lips

By Julie Cwir;
Illustrated by Olga Egorova 

This children’s book describes the ups and downs of the cleft journey. The illustrations of baby animals represent clefts of all types.This book is a resource for describing and illustrating the cleft journey in a simplistic manner that is easy for young children to understand.    

The Day Bert Smiled

By Christine Maier
Illustrated by Aviva Brueckner
Ages 6 to 9 years 

Why Me, Mama?

By Katherine Lockwood
Illustrated by Evgeniya Erokhina
Ages 3 and up

This children’s book about differences is set in the Public Garden in Boston, MA. Each animal in the park has a difference and as the mama and baby owl visit their friends in the park, they will learn about these differences – helping the baby owl to understand the different disabilities represented by the other animals, normalizing disability as a part of everyday life, and provide a foundation for acceptance and empathy for others and within themselves.

Various disabilities are individually highlighted in this book including facial paralysis/weakness, inability to abduct the eyes (Duane Syndrome), club feet, cleft palate, hypotonia, limb differences, strabismus, autism, Pierre Robin sequence, Poland Syndrome, developmental delay, congenital heart defect, speech, hearing and vision differences, and feeding and respiratory difficulties.

Jack’s New Smile: Having a Baby with Cleft Lip and Palate

By Ruth M Trivelpiece MEd, Suzanne N West MSN, and Jennifer L Rhodes MD
Illustrated by Brooke Nunez
Ages 4 and up

Jack’s New Smile was written for brothers and sisters of a new baby with cleft lip/palate. Baby Jack’s experience with cleft lip and palate is recounted through the eyes of his loving older sister. The book is also intended for children born with a cleft to help them learn about themselves. It is meant to provide some answers to questions children may not know how to ask. We hope that by reading this story, your child will know that having a cleft is not scary or bad. The book can also be used as a starting point for a more detailed talk with older children. Also available in SPANISH under the title LA NUEVA SONRISA DE JACK.

Smile with Simon

By Patricia Ann Simon, RN
Illustrated by Valerie McCord
Ages 4 and up

Simon, a bright, red cardinal, hatched from his shell with a big gap in his beak. The gap made it hard for him to eat. Simon was not strong enough to fly. One day, he accidentally fell out of the nest and couldn’t get back to his family. Patty discovered the little bird and realized he suffered from the same thing as she, a cleft lip. A story of friendship, love, acceptance, and kindness, this playful picture book for children shares the importance a smile has on others. It teaches a powerful lesson-despite people’s differences, we are alike and beautiful.

Amber’s Adventures with Goldenhar

By Breanna Mendoza
Edited and Illustrated by Miel Rodriguez

Amber is a cheery, optimistic, fun-loving girl who is a bit different from all of her friends — she has something called Goldenhar Syndrome, which makes her super unique! Amber makes a trip to the hospital. Going to the hospital can be scary, but Amber draws her strength from something special: the Goldenhar Galaxy! Follow Amber, her dad, Nurse Hope and friends along her hospital journey through the cosmos.

Peter’s Rockin’ Ear

By Dede Dankelson
BiblioKid Publishing, 2022
Ages 4 and up

Peter wishes he looked like everyone else, but he was born with only one ear (a condition called Microtia). He tries to make one, but nothing works until his parents take him to an ear store. Peter wears his new ear to Shredapalooza. But will it stick long enough for him to feel like a real rock star? Inspired by the true story of Peter Dankelson and the Pete’s Diary mission to amplify self-acceptance. This picture book encourages everyone to embrace their own differences.

The Courage to be Kind

By Jenny Levin and Rena Rosen
Archway Publishing, 2017

Have you been at the grocery store and your child points at someone who looks different and asks loudly, “What’s wrong with that person?” or “Why does he need a wheelchair?” Your first reaction is usually to hush your child and apologize to the person or hope he or she didn’t notice. Telling a child to be quiet and not look can be shameful for both the child and the person with the difference. Instead of silencing our children and ignoring their curiosity, we should embrace uniqueness in a positive way.

In The Courage to Be Kind, authors Jenny Levin and Rena Rosen teach children and parents how to act and respond when they see someone who looks different. Learn with Sam and Ellie as they encounter and interact with several kids in different ways. Ellie is blunt and often offensive. Sam tries to find common ground with each person and provides an example of how to behave. The dramatization of each difference includes photographs and a list of frequently asked questions so kids and parents can learn about various syndromes together. Through a series of scenarios, The Courage to Be Kind offers a tool to facilitate conversations about kindness and to teach with the art of compassion.

Wonder

By R.J. Palacio
Alfred A. Knopf, 2012
Ages 8 and up
Also available in an Illustrated Edition

August Pullman was born with Treacher Collins Syndrome, a craniofacial condition that up until now, has prevented him from going to a mainstream school. Starting fifth grade at Beecher Prep, he wants nothing more than to be treated as an ordinary kid—but his new classmates can’t get past Auggie’s extraordinary face. WONDER by R. J. Palacio begins from Auggie’s point of view, but soon switches to include that of his classmates, his sister, her boyfriend, and others. These perspectives converge in a portrait of one community’s struggle with empathy, compassion, and acceptance.

In a world where bullying among young people is an epidemic, this is a refreshing new narrative full of heart and hope. R. J. Palacio has called her debut novel “a meditation on kindness”—indeed, every reader will come away with a greater appreciation for the simple courage of friendship. Auggie is a hero to root for, a diamond in the rough who proves that you can’t blend in when you were born to stand out.

We’re All Wonders

Written and Illustrated by R.J. Palacio
Knopf Books for Young Readers, 2017
Ages 3 and up

Over 15 million people have fallen in love with Wonder and have joined the movement to Choose Kind. Now younger readers can meet Auggie Pullman, an ordinary boy with an extraordinary face, and his beloved dog, Daisy. We’re All Wonders may be Auggie’s story, but it taps into every child’s longing to belong, and to be seen for who they truly are. It’s the perfect way for families and educators to talk about empathy and kindness with young children.

RELATED: Watch a Recorded Read Aloud and Q&A with R. J. Palacio of We’re All Wonders.

Auggie & Me: Three Wonder Stories

By R.J. Palacio
Corgi Children’s Paperback, 2015
Ages 8 and up

WONDER tells the story of Auggie Pullman, an ordinary boy with an extraordinary face, whose first year at school changed the lives and the perspectives of everyone around him. Auggie & Me gives readers a special look at Auggie’s world through three new points of view. These stories are an extra peek at Auggie before he started at Beecher Prep and during his first year there. Readers get to see him through the eyes of Julian, the bully; Christopher, Auggie’s oldest friend; and Charlotte, Auggie’s new friend at school. Together, these three stories are a treasure for readers who don’t want to leave Auggie behind when they finish WONDER.

365 Days of Wonder: Mr. Browne’s Book of Precepts

By R.J. Palacio
Knopf Books for Young Readers, 2014
Ages 8 and up

In WONDER, readers were introduced to memorable English teacher Mr. Browne and his love of precepts. This companion book features conversations between Mr. Browne and Auggie, Julian, Summer, Jack Will, and others, giving readers a special peek at their lives after WONDER ends. Mr. Browne’s essays and correspondence are rounded out by a precept for each day of the year—drawn from popular songs to children’s books to inscriptions on Egyptian tombstones to fortune cookies. His selections celebrate the goodness of human beings, the strength of people’s hearts, and the power of people’s wills. There’s something for everyone here, with words of wisdom from such noteworthy people as Anne Frank, Martin Luther King Jr., Confucius, Goethe, Sappho—and over 100 readers of WONDER who sent R. J. Palacio their own precepts.

Turtle Boy

by Evan Wolkenstein
Delacorte Press, 2020
Ages 10 and up

Seventh grade is not going well for Will Levine. Kids at school bully him because of his funny-looking chin. And for his bar mitzvah community service project, he’s forced to go to the hospital to visit RJ, an older boy struggling with an incurable disease. At first, the boys don’t get along, but then RJ shares his bucket list with Will. Among the things he wants to do: ride a roller coaster, go to a school dance, swim in the ocean. To Will, happiness is hanging out in his room, alone, preferably with the turtles he collects. But as RJ’s disease worsens, Will realizes he needs to tackle the bucket list on his new friend’s behalf before it’s too late. It seems like an impossible mission, way outside Will’s comfort zone. But as he completes each task with RJ’s guidance, Will learns that life is too short to live in a shell.

Ride High Pineapple

By Jenny Woolsey
Pearls of Wisdom Press, 2016
Ages 10 and up

Issy Burgess is in Year Nine at Pinnaroo High. She hoped this year would be different, but it’s turning out to be just as bad as Year Eight was. Follow Issy through her journal, as she tries to deal with The Beast who calls her ‘Froggy eyes’, ‘Fish Face’ and other cruel names, bouts of paralysing anxiety, feeling ugly, friendship ups and downs, and a crush on Tim – the cutest boy in her class. Can Issy’s passion for skateboarding help her?

Babyface: A Story of Heart and Bones.

By Jeanne McDermott

When Jeanne McDermott’s second child, Nathaniel, was born with Apert syndrome—a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens—she was completely unprepared for it. In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family’s traumatic yet enriching experience. Though McDermott and her family had to endure Nathaniel’s harrowing surgeries and the stares and comments of strangers and well-meaning friends, they were also transformed by the boy’s amazing strength and exuberant personality. With grace, courage, and humor, McDermott shows readers how a child with a rare syndrome can illuminate “a whole new way of seeing, not simply him and others, but ourselves.”

At Face Value: My Triumph Over a Disfiguring Cancer

Terry Healy

Caveat Press, 2006

Terry Healey was a junior at the University of California at Berkeley. At the age of twenty, his life had been smooth sailing, seldom interrupted with adversity or difficulty. Terry was confident and not concerned much with his appearance. But out of nowhere, a lump formed behind his right nostril. Cancer. He fought it and survived. But after multiple surgeries and radiation treatment, Terry would discover that he hadn’t even begun to deal with what would become his greatest struggle for years to come — the disfigurement that resulted from it.

Choosing Ourselves: Love and Advocacy in Overcoming the American Medical System

By Barbara R. Walker, PhD and Jim H. Walker
River Grove Books

Barbara Walker’s world was turned upside down by her son Jim’s birth defect.

Left to her own devices in the early years, Barbara struggles with grief from the loss of the expected “normal child” and battles self-defeating thoughts. Demoralizing encounters with medical professionals and insensitive remarks about Jim’s face leave mother and child feeling vulnerable. They struggle with self-blame and fight against dark thoughts.

Over time they encounter and endure new doctors, multiple surgeries with disappointing results, and peers who taunt and bully. Gradually, Jim and Barbara empower themselves in their own ways, protest dismissive treatment, and become strong advocates for themselves. Jim proves to himself he can handle the world on his own after a successful 400-mile solo bike trip. As he ages into a young adult, Barbara frees herself from her own worries and drawing on her experiences, shapes a career as a counseling psychologist so that she can address the needs of parents of children with birth defects and disabilities. Jim also develops a successful career, a loving partnership, and a settled relationship with his cleft palate.

Then, prompted by an invitation from her 45-year-old son to “share our story,” mother and son embark on an unflinching account of their personal and shared experiences, their often-differing memories, and how they dealt with and learned from his cleft lip and palate birth defect.

Entwined with Barbara’s narrative of her mothering experience, Jim’s poems shine a light on a teenager’s struggle, and both discover that this candid sharing of private challenges has taken them to a deeper parent–child relationship.

For children with birth defects, the message of this powerful, tender, and truthful book is “You are not alone; hardship is not ruinous; a full life is yours even if your hopes are not completely realized.”

A Face for Picasso: Coming of Age with Crouzon Syndrome

By Ariel Henley
Farrar, Straus & Giroux, 2021
Ages 13 and up

A memoir about coming of age with Síndrome de Crouzon. At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome – a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive it. Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement. Ariel explores beauty and identity in her young-adult memoir about resilience, sisterhood, and the strength it takes to put your life, and yourself, back together time and time again.

Ugly

By Robert Hoge
Hachette Australia, 2015; Viking, 2016.
Ages 8 and up

When Robert Hoge was born, he had a tumor the size of a tennis ball in the middle of his face and short, twisted legs. Surgeons removed the tumor and made him a new nose from one of his toes.  Amazingly, he survived—with a face that would never be the same. Strangers stared at him. Kids called him names, and adults could be cruel, too. Everybody seemed to agree that he was “ugly.” But Robert refused to let his face define him. He played pranks, got into trouble, had adventures with his big family, and finally found a sport that was perfect for him to play. As Robert came face to face with the biggest decision of his life, he followed his heart. This poignant memoir about overcoming bullying and thriving with disabilities shows that what makes us “ugly” also makes us who we are.

Shelley: The Uplifting Story of a Battle to Overcome Disfigurement

By Shelley Hull
Hornet Books, 2019

Shelley Hull’s inspirational memoir is a story about growing up as a young girl with facial disfigurement, daring to wish that someday she’d live a normal life and fit in. It records the journey of a timid, shy child with no self-confidence or worth, experiencing the world of modern medicine, maxillofacial surgery, and setbacks around every corner. The eventually successful surgery included more than 20 operations, the most challenging endured during Shelley s teenage years. The extremely rare condition led to almost unbearable facial disfigurement and hearing loss which became the subject of one of the case studies in Derek Henderson’s A Colour Atlas and Textbook of Orthognathic Surgery: The Surgery of Facial Skeletal Deformity. These days Shelley is a confident survivor who seeks to inspire others with her story of hardship, hope and perspective. As she says towards the end of her book, “scars are on my face and body, but not in my heart.”

Normal: One Kid’s Extraordinary Journey

By Magdalena and Nathaniel Newman
Clarion Books, 2021
Ages 10 and up

In this uplifting and humorous memoir brimming with black-and-white comic illustrations, Nathaniel and his mother, Magda, tell the story of his growing up with the same craniofacial syndrome as the boy from WONDER — from facing sixty-seven surgeries before the age of fifteen, to making friends, moving across the country, and persevering through hardships. How they tackle extraordinary circumstances with love and resilience is a true testament to Nathaniel and Magda’s extraordinary family, and to families everywhere who quietly but courageously persist.

Diary of a Beautiful Disaster

REARRANGED: An Opera Singer’s Facial Cancer and Life Transposed

“REARRANGED tells of leaving the operatic stage for a starring role opposite the Big C. A rare bone cancer [osteosarcoma] in my cheek ended my career as a New York City opera singer, and brought me face to face with mortality, disfigurement, the meaning and uses of beauty—and a lot of left-over pieces. A small corps of medical elites convened to excoriate my diseased bones with surgical wizardry and lethal toxins, and stayed on to restore me to myself through a brutal alchemy of kindness and titanium screws. REARRANGED is a tale of letting go to hold on, of putting old pieces to new uses—and of the unlikely arrangements that make it all work out.”

Not All Heroes Wear Capes

By Jono Lancaster

“Finding self-acceptance hasn’t always been easy. I was abandoned at birth with a facial difference, and as I got older, I began to hate my face and the world I lived in. Gradually, through trial and error, random moments with strangers, and some tragic haircuts, I’ve found self-love and happiness. This book is the story of how I found my way out of difficult times, and how you can do the same.”

Jono Lancaster was born with Treacher Collins Syndrome – a condition that affects facial appearance – and at only two weeks old, he found himself in foster care. In his remarkable story, Jono shares the highs and lows of his journey and how he turned his differences into his greatest strengths. Inspirational, empowering and moving – this is an extraordinary memoir with a powerful message: you are strong enough to become your own hero.

Children with Facial Difference: A Parents’ Guide

By Hope Charkins
Woodbine House, 1996

Each year, thousands of children are born with facial difference-abnormalities of the bones and tissues of the head and face that are present at birth or appear a few years later. Some conditions occur more commonly, such as labio leporino y paladar hendido, while others, such as hemifacial microsomia, Treacher Collins Syndrome, Síndrome de Apert, and Síndrome de Crouzon, are rarer. In addition to the emotional hardship of a different appearance and the attached stigma, some of these conditions pose special health concerns.
A resource that parents can turn to for help is Children with Facial Difference, the first comprehensive book to provide parents with up-to-date information and support.

Each chapter of Children with Facial Difference includes parent statements, reassuring and useful bits of information and insights from parents of children with facial difference. These statements help alleviate feelings of isolation and provide comfort and support. With a foreword by Joseph E. Murray, M.D., a Nobel Prize winner in medicine and a pioneer in craniofacial surgery, this book also includes a glossary of terms, a reading list, a resource list of organizations, and an index.

The Facemaker: A Visionary Surgeon’s Battle to Mend the Disfigured Soldiers of World War I

By Lindsey Fitzharris
Farrar, Straus & Giroux, 2022

From the moment the first machine gun rang out over the Western Front, one thing was clear: humankind’s military technology had wildly surpassed its medical capabilities. Bodies were battered, gouged, hacked, and gassed. The First World War claimed millions of lives and left millions more wounded and disfigured. In the midst of this brutality, however, there were also those who strove to alleviate suffering. The Facemaker tells the extraordinary story of such an individual: the pioneering plastic surgeon Harold Gillies, who dedicated himself to reconstructing the burned and broken faces of the injured soldiers under his care.

Gillies, a Cambridge-educated New Zealander, became interested in the nascent field of plastic surgery after encountering the human wreckage on the front. Returning to Britain, he established one of the world’s first hospitals dedicated entirely to facial reconstruction. There, Gillies assembled a unique group of practitioners whose task was to rebuild what had been torn apart, to re-create what had been destroyed. At a time when losing a limb made a soldier a hero, but losing a face made him a monster to a society largely intolerant of disfigurement, Gillies restored not just the faces of the wounded but also their spirits. The Facemaker places Gillies’s ingenious surgical innovations alongside the dramatic stories of soldiers whose lives were wrecked and repaired. The result is a vivid account of how medicine can be an art, and of what courage and imagination can accomplish in the presence of relentless horror.

I’ve Just Seen a Face: A Practical and Emotional Guide for Parents of Children Born with Cleft Lip and Palate (Year One and Beyond)

By Amy Mendillo
Luminare Press, 2023

Hearing the news of a baby’s labio leporino y paladar hendido can feel overwhelming for a parent. Amy Mendillo, health writer and cleft parent, has been there. Now, she has produced the most comprehensive guide ever written for parents of children born with clefts.
Based on extensive interviews with fellow parents and cleft-team pros—plus exhaustive research from medical literature—I’ve Just Seen a Face (named after the Beatles song) contains essential medical information, emotional insights, and insiders’ tips to help parents with countless decisions, big and small, during the intense first year of treatment and beyond. It is also full of personable stories that will help parents feel more supported and less alone. This book contains:
• Basics on the condition and its treatment, explained in everyday language
• Guidance on preparing for surgery and recovery—and handling feelings along the way
• Honest discussions of issues like bonding with a baby, taking photos, and responding to strangers in public
• Step-by-step instructions on how to feed a cleft-affected baby, plus loads of inside tips and tricks
• Key lessons on speaking up for a baby in the delivery room, exam room, recovery room, and beyond
A warm and lively read, I’ve Just Seen a Face addresses the practical and emotional needs of families during a challenging time—and offers information, insights, and reassurance.

Children with Cleft Lip and Palate: A Parents’ Guide to Early Speech-Language Development and Treatment

By Mary A. Hardin-Jones, Kathy L. Chapman, and Nancy J. Scherer
Woodbine House, 2015

Turn to this book for family-friendly guidance and support for young children with clefts–cleft lip, cleft palate, and cleft lip/palate–one of the most commonly occurring birth defects. Learn about:
– what clefts are
– how they are repaired and when
– feeding problems before and after surgery
– dental issues
– hearing & middle ear problems
– your child’s treatment team
– your child’s perspective
– velopharyngeal inadequacy
– speech-language skill building activities

A team of speech-language pathologists focuses especially on mitigating the speech and language problems experienced by infants and toddlers (ages birth to three) with cleft palate. Parents can use the book’s dozens of practical, hands-on activities to improve their child’s speech. For example, Bug Race! uses a cotton ball or pom-pom–add eyes and voilà, you have a bug!–that the child moves by releasing pressure from behind the lips to stimulate oral airflow to produce the consonant /p/. Build valuable speech skills while you both have fun!

Helpful strategies, illustrations of cleft repair procedures, photos of equipment, and recommended resources empower parents to get started on addressing speech problems for very young children and other issues for school-aged children. Speech-language pathologists, early intervention specialists, and medical professionals will also want this book to recommend to the families they serve.