People with cleft lip and palate, as well as their families, face many issues associated with this birth defect. Although clefts may seem like cosmetic problems, they adversely impact basic functions like eating and speaking. Children with clefts must endure multiple corrective surgeries, often beginning when they are only a few months old. However, the surgeries are often just the beginning.
The day Kodjo was born four years ago in a small village in eastern Ghana, his mother was given devastating news: Her baby boy was a river god's son, and the elders of the village said he would need to be sacrificed.
The reason she was told this? He had gaps in his face.
Once upon a time in Europe, pregnant women avoided rabbits to prevent their babies from being born with a 'harelip.' But, that isn't the only misconception about the condition now known as cleft lip. Researchers report the popular modern belief that the condition is caused by a gene is wrong. Their research could transform how we understand the formation of the face.
Because cleft repair is typically a simple procedure that can take as little as 45 minutes and cost $250, we don’t see many children with cleft palates here in the U.S. Generally, they receive surgery very early on after birth. In developing countries, however, 1 in 700 children are born with cleft, which studies have shown is the result of a combination of genetics and environmental factors. Footing the cost of surgery is nearly impossible for these families.
Fortunately, for the past 15 years, a nonprofit called Smile Train has been providing free cleft repair surgery to an average of 340 children each day.
Our firstborn child Bailey was born with a right-sided unilateral cleft lip and palate. While many parents are surprised at birth, we were fortunate to have found out about Bailey's cleft at a 24-week ultrasound. On ultrasound our doctor was able to visualize the cleft lip, but the palate is usually unable to be confirmed before birth, which was also true in our case.
Cleft Lip and cleft Palate can occur simultaneously, or independent of the other. In other words, having cleft lip does not necessarily mean cleft palate is present (and vice versa). But, both can occur to one individual as well.
The patients go on to lead full lives and become productive members of society.
Take a deep breath. Think about the last thing you ate or the last time you spoke out loud. For many of us, we take these simple actions for granted.
Now, imagine struggling to breathe, eat, or speak, every second of every day. This was me as an infant and it is the reality for millions of children with untreated cleft lip and/or palate.
Even before I became a parent I was a worrier, and now that I have two kids of my own, I am a champion. I can “what-if” with the best of them. And yet, I never saw this coming…
We knew from ultrasound photos that our son Dylan would arrive in this world with the same birth defect as the babies we’ve all seen in those Smile Train ads, the ones featuring children with faces and stories so desperate and concerning that they compel people to donate.
To treat patients still suffering from cleft lip
and palate with complete medical and
surgical care. We serve the underserved.
Without surgery, 9 in 10 children born with a cleft condition could die. Your monthly gift will change their lives.
Smile Train is an international children’s charity with a sustainable approach to a single, solvable problem: cleft lip and palate.
A blog about our son Jake, born in 2008 with a cleft lip and palate. I started it the day after the cleft was diagnosed and continue to write for people who turn up here every day after getting the same news. A cleft lip and palate is not the end of the world. Start at the first post and then read on...
Since 1979, The Cleft Lip and Palate Association (CLAPA) has been the only national charity dedicated to all those with and affected by cleft lip and/or palate in the UK.
Making a world of difference in a world of facial differences.
Rachel was born August 31, 2004 with a unilateral cleft lip and palate. This blog follows Rachel's progress on this journey of repairs, her continued progress, and development into a little girl that brings many blessings.
Welcome! It is my hope that Step by Step Cleft will educate, inspire, and uplift all who come across it! This blog is meant to be read from the beginning, or oldest post to the most recent post.
The mission of The Cleft Palate-Craniofacial Journal is to publish information of the highest scientific quality regarding cleft palate and other craniofacial anomalies in order to advance the global education of scientists and clinicians.
A diary of our experience following an antenatal Cleft diagnosis.
This blog is dedicated to my sweet baby boy William, who was born on 9/20/2013 with a bilateral cleft lip and palate. I created this blog to capture the multi-year journey we are about to embark upon and to share our story with anyone who is interested. Hopefully, our story will help other families who are in the same situation, and will maybe even spread some awareness about this common birth defect.
Provides comprehensive information to educate patients, families, and professionals •makes referrals to cleft/craniofacial treatment teams
Advancing patient care and research for individuals affected with cleft lip, cleft palate and other craniofacial anomalies.
Cleft lip and/or palate that occurs with no other major defects is the most common birth defect in the United States. Cleft lip and cleft palate occur very early in pregnancy. Many possible causes are being investigated, but no single cause has been identified.
Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. Together, these birth defects commonly are called “orofacial clefts”.
Cleft lip/palate is a part of more than 400 syndromes including Waardenburg, Pierre Robin, and Down syndromes. Approximately 30 percent of cleft deformities are associated with a syndrome, so a thorough medical evaluation and genetic counseling is recommended for cleft patients.
Children with a cleft lip or a cleft palate often have problems with feeding and talking. They also might have ear infections, hearing loss, and problems with their teeth.
Often, surgery can close the lip and palate. Cleft lip surgery is usually done before age 12 months, and cleft palate surgery is done before 18 months.
Mercy Ships, a global charity, has operated a fleet of hospital ships in developing nations since 1978. Mercy Ships follows the 2000-year-old model of Jesus, bringing hope and healing to the world’s forgotten poor.
In a few cases, cleft lip and palate is associated with:
•the genes a child inherits from their parents (although most cases are a one-off)
•smoking during pregnancy or drinking alcohol during pregnancy
•obesity during pregnancy
•a lack of folic acid during pregnancy
•taking certain medicines in early pregnancy, such as some anti-seizure medications and steroid tablets.
Although not a major cause of mortality in the developed world, it can lead to poor feeding, failure to thrive and impaired survival in places where healthcare resources are poor. CLP is a major cause of morbidity in places where corrective surgery is not available. Children may experience social stigmatisation, in addition to problems with speaking and hearing