Cleft Lip and Palate
Give every child the chance to smile - Smile Train
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. I never imagined having a baby with a face like that in the same way that one doesn’t foresee giving birth to a child with an unexpected birthmark or color of hair. I also never pictured growing to love a “defect” so intensely that I would feel crushed when the time came to let it go.
The minute we received Dylan’s diagnosis, the blissful passivity associated with normal pregnancy was over. Clefts can be indicators of all kinds of potential issues, like heart defects or Down syndrome, so I was immediately filled with worry about his overall health. During the next four months, we tried to win a stressful game of medical whack-a-mole by visiting specialists, drawing blood and having Costco-size quantities of cold ultrasound jelly rubbed on my expanding belly.
During this time I also worried about correcting Dylan’s appearance. There is no way to know how extreme a cleft will be until birth, so we prepared for the worst by interviewing multiple plastic surgeons in various cities, trying to find the one who could create the smallest scar and the most natural-looking lip. I also educated myself on the condition and its latest treatments, mostly through late-night Internet research sessions, which sometimes left me feeling like my baby was nestled in the pit of my stomach. I still remember reading this excerpt on a cleft palate website: “Every baby born in Uganda with a cleft is given the name Ajok, which means literally ‘cursed by God.’ Some newborns are killed or abandoned right after birth.”
We don’t live in Uganda, but a few days later, one of my friends asked me if I was going to abort my cleft baby.
Comments like these stung, but my husband and I felt emotionally prepared for our son’s unique feature thanks to college jobs we had at a camp for physically disabled kids. From our experience, we knew that even when optimal medical outcomes aren’t achieved, loved ones seem to barely notice because they see something else: a set of characteristics, an accumulation of memories, the essence of a person. They see an individual with physical differences in the glossed-over way we all see the people we spend a lot of time with.
Still, we weren’t prepared for all the logistical and physical challenges Dylan (and we) would have to overcome once he was born. When Dylan was two weeks old, we moved our family across the country for a higher-paying job (we’ve coined a saying in our house — another day, another mailbox full of medical bills). At three weeks, Dylan began treatment for his cleft. We began shuttling back and forth to endless doctor appointments. Dylan wore a medieval-looking orthodontic appliance, and his upper lip was taped together for two months. His skin grew raw from the adhesive, and scabs formed on his face.
I love how steadily love for a new baby builds. But with Dylan, I also felt something else grow: respect. I snapped at my husband, cried from exhaustion and ate in search of comfort during this stressful time. But Dylan stayed sweet, smiley and calm. The kid has grit, and he has already taught me so much about how I want to face the change-ups life throws at me.
Another wonderful surprise arose as well: I quickly fell in love with Dylan’s wide, triangular smile. As his lip repair surgery date neared, I began to feel anxiety about saying goodbye to the face he was born with. We spent so much time thinking about how to “fix” our son while I was pregnant that I never saw this coming. I spent the week before surgery photographing Dylan from every angle and in every light. I described details that I would never see again in my journal, like the little bubbles that popped out from the gap in his upper gum when he laughed, and I framed several “before” photographs to keep around our house. I want him to always know that we adored the way he looked at birth. To us, he was perfect. Once I saw him for the first time, I couldn’t imagine how I ever wanted to change anything about him.
I’m certain we did the right thing by correcting our son’s lip. This surgery, along with a second one that corrected his palate, eased his ability to breathe, eat and speak. We hope it will also eventually make a lot of the good stuff in life, like singing, telling jokes or asking someone out on a date, less difficult.
But I’ll always carry with me this ache in my heart that wonders what he would have looked like (and what his life would have been like) if we had not changed him. His lip-repair feels like a juncture in a choose-your-own-adventure-story. The journey we chose for him will be easier, but as the most interested and admiring observer of his life and of his quiet strength, I wish I could read the other version, too.
Source: Shawnee Barton, The Cleft-Lip Smile I Never Knew I’d Miss, Motherlode, The New York Times, March 9, 2014.
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