In November 2021, I traveled to Kenya with Smile Train to learn more about the work they do on the ground to help individuals with cleft lip and palate. Having grown up in New York with a great cleft team, I knew I had been lucky with the care I received. Kenya let me know how lucky I was.
While there were many differences in access to care and the actual care itself, the journey that cleft affected individuals go through has many similarities. Surgeries, hearing, speech, and dental issues. Also, living in a world where there is a lot of misinformation about clefts can be another challenge.
That’s why I wrote The Day Bert Smiled, to help educate the public about cleft lip and palate. I choose a children’s book because they’re fun to write, but more importantly they help develop compassionate and educated adults.
As I wrote The Day Bert Smiled, I remembered receiving get well cards from classmates after one of my surgeries in elementary school. Those cards let me know the kids in my class cared about me and wanted me to come back to school. They told me I was accepted. I wanted to share that acceptance with generations of children from around the world.
Now you have an opportunity to do that for others.
There are many ways to support cleft affected individuals. Please take some time to explore this page for different ways you can show your support.
What is a cleft lip and palate?
1 in 700 babies is born with a cleft lip and/or palate.
A Child is born with a cleft lip and/or palate every 3 seconds.
200,000+ babies are born with clefts every year globally.
What is a cleft lip and palate?
Cleft Lip – An opening in the upper lip. This occurs when the tissue that makes up the lip does not join completely before birth. The opening in the lip can be a small slit or it can be a large opening that goes through the lip into the nose.
Cleft Palate – An opening in the roof of the mouth. This occurs when the tissue that makes up the roof of the mouth does not join together completely during pregnancy.
Children can be born with a cleft lip or cleft palate. Some children are born with both a cleft lip and palate.
Cleft lip and palate can be on one side (unilateral) or both sides (bilateral).
Causes
Cleft lip and cleft palate are thought to be caused by a combination of genes and other factors, such as things the mother comes in contact with in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy.
Diagnosis
Cleft lip can usually be diagnosed during a routine ultrasound. Both cleft lip and palate can be diagnosed after the baby is born. Certain types of cleft palate might not be diagnosed until later in life.
Impact
Children with clefts may experience issues with breathing, eating, hearing, and speech. Treatment can include therapies, devices to improve quality of life, and surgery.
Surgical repair of a cleft lip usually occurs in the first few months. Surgery to repair a cleft palate happens later, typically within 18 months. Additional surgeries are often necessary.
As children get older, they may experience difficulty with their teeth and language development.
With treatment, most children with clefts do well and lead a healthy life. Some children with orofacial clefts may have issues with self-esteem if they are concerned with visible differences between themselves and other children.
Resources
Individuals and families affected by clefts face many challenges. This may include financial hardship, access to care, acceptance, and isolation. Supporting families through this journey is easier than many realize by contributing to existing organizations through their programs. Send get well cards, invite speakers into your child’s school, advocate for much needed legislative reform, or financial donations.
Below you’ll find resources to support the cleft and craniofacial communities:
Smile Train
Smile Train is the world’s largest cleft-focused organization, with a sustainable and local model of supporting surgery and other forms of essential care. Over the last 20+ years, we have supported safe, high-quality, and FREE cleft care for 1.5+ million children and will continue to do so until every child in need with a cleft has access to the care they deserve.
Cuddles for Clefts
Founded with the idea that cleft affected families should not feel alone. Cuddles for clefts are a source of comfort and support when you or someone you love undergoes a cleft related operation. They hope to come alongside you and remind you there are others walking the same journey.
My Face
myFace is a non-profit organization dedicated to changing the faces – and transforming the lives – of children and adults with facial differences.
Children’s Craniofacial Association (CCA)
CCA’s mission is to empower and give hope to individuals and families affected by facial differences.
Hagedorn Cleft Palate and Craniofacial Center
At the Hagedorn Cleft Palate and Craniofacial Center, we understand your concerns and strive for excellence in the care of infants, children and adolescents with congenital and acquired craniofacial disorders.
This is the center where Crissy had her repairs completed under the care of Dr. Bertram Bromberg
American Cleft Palate Craniofacial Association (ACPA)
The American Cleft Palate Craniofacial Association (ACPA) is the premier scientific resource and interdisciplinary professional network for healthcare providers serving patients with cleft lip, cleft palate, and craniofacial differences.
ACPA works to support the care of patients affected by cleft and craniofacial conditions. These patients require care from a variety of specialists over time, and ACPA optimizes outcomes for individuals with oral cleft and craniofacial conditions through education, support, research and interdisciplinary team care.
Ensuring Lasting Smiles Act (ELSA) – Proposed US Based Legislation
The Ensuring Lasting Smiles Act (ELSA) would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities. That coverage would include services and procedures for any missing or abnormal body part necessary to achieve normal body function, including teeth.
He and his pup may look a bit different, but their hearts are as big as can be…
Bert is nervous. Born with an opening in his mouth that he feels makes him sound funny, the young boy doesn’t like to speak up in first grade. But he’s worried his friends won’t even notice when he’s out of school for surgery to fix it.
And when his mom comes to class to teach the students about his condition, will he find comfort in having supportive playmates?
In a gentle and educational story centered on a boy and his dog who both have a cleft lip and palate, youngsters will learn to appreciate and support their peers and each other. And with compassionate ideas of the various ways youth can help those with medical challenges, your little ones will develop minds and hearts that genuinely care.
The Day Bert Smiled is an inspirational children’s book suitable for ages 6-9. If you or your child like relatable characters, themes of empathy and kindness, and sweet lessons, then you’ll love Christine Maier’s charming tale.
Buy The Day Bert Smiled to stand up for friends today!
