What It’s Like To Grow Up With A Cleft Lip and Cleft Palate
What Are Cleft Lip and Cleft Palate?
Cleft lip and palate are birth defects that create a split in the lip and palate (roof of the mouth). These malformations are formed in the womb about 6 to 12 weeks into pregnancy and occur because the lip and/or palate do not have enough tissue to form properly.
People can be born with either or both conditions, and either condition can be unilateral (occurring only on one side) or bilateral (on both sides). I was born with a unilateral cleft lip and unilateral cleft palate—both on the right side.
It is a relatively common condition, with 1 in 700 babies in the US being born with some form of it, but I haven't really seen much written or discussed about it from the perspective of the patient, so I wanted to share information about what it is like and show my experiences growing up with these conditions.
Common Problems With Cleft Lip and Cleft Palate
There are several common issues that people with cleft lip and palate face, including:
- Difficulties eating
- Speech problems
- Hearing issues
- Other complications
It is common to be cared for by an entire team of doctors from different disciplines because issues can come up in a lot of different areas that may require specialized attention. A lot of surgery is required, and treatment will last for the patient's entire childhood and beyond.
To treat these issues, I had the entire UNC Chapel Hill Craniofacial Team work with me, as well as many medical students training there—from plastic surgeons to oral surgeons to speech therapists and physical therapists.
1. Difficulties Eating
Having a cleft lip and palate can make it difficult to eat if not repaired as food can easily go through the roof of the mouth and out of the nose. I had a lot of food get stuck in my palate growing up, and I am still a picky eater because of this. I had rice clog up my nasal cavity and had trouble breathing once when I was about 3 or 4, and I've only recently gotten over my aversion to rice.
Even as a baby, people with clefts will need special bottles, which can be hard to find and cost more than the average bottles. Additionally, they may be missing teeth, gum tissue, and facial bones, so a LOT of dental work will be required throughout their lifetime. Braces are a necessity, and tooth extractions and implantations are very likely in order to get your teeth in the right position for a comfortable bite.
2. Speech Problems
Speech problems are also common in patients with clefts; a person's voice will be softer and more nasal. They will have difficulty producing certain consonants like S, so it may be hard for people to understand them.
I was in speech therapy for a long time, and at times, it was really frustrating when I would say things that nobody could understand. I really had to work to speak up and had to focus to project my voice.
3. Hearing Issues
People with cleft lip and palate are also prone to ear infections due to fluid build-up in the ears. They and may have issues with hearing loss because of this. I had to have tubes put into my eardrums twice to drain the fluid, and I still have some hearing loss in my right ear. Some people have to undergo this operation many times and still go deaf or partially lose their hearing. Doctors recommend that you get your hearing tested every year as a kid until your clefts are repaired.
4. Other Complications
Other parts of the body may be clefted or missing as well, or you may have extra parts. I have part of my retina missing in my right eye and an extra vertebra in my spine. Others may have missing heart tissue, spinal tissue, and parts of other organs, or they may have extra organs.
Complications like Bell's palsy—which partially paralyzed the right side of my face, particularly around my eyebrow and the corner of my mouth—can also occur. Heart conditions, such as arrhythmia, are also common.
Anxiety and depression are not unheard of, particularly in children and teens who have been bullied for their differences.
My Experience With Cleft Lip and Cleft Palate
Doctors Didn't Know Much About My Condition Back Then
When I was born with a unilateral cleft lip and cleft palate—in an Army hospital to a teenaged mother—nobody really knew what to do with me. Back in the 90s, these were rare and poorly understood birth defects, so the hospital didn't have any special supplies on hand.
I lost a whole pound after birth. I didn't eat until almost a day after I was born, when a hospital from two hours away was found to have the right kind of bottles.
It's much better nowadays for kids born with this defect, as bottles are more widely available, surgical technology has improved (especially for cosmetics), and treatments like speech therapy are less stigmatized. Back then, it was hard on the people around me.
My Family Was Understandably Worried, but Also Very Supportive
My family was shocked by the way I looked. The first thing my grandparents heard when I was born was that something was wrong with the baby, and they were told that I looked "different." They were worried when they found out how many surgeries I would need to live a normal life, but they came to terms with it. My mom worked so hard to finish high school and went through nursing school to support me. My maternal grandparents provided us with a home, financial support, and even babysat me while Mom was at school.
I have never known my dad's parents. His mother did not approve of me being born and wanted my mom to get an abortion. When I was born, she decided to not have a relationship with me. His father died before I was born, but I love my dad, and he always made an effort to be in my life.
Other than growing up without two sets of grandparents I had a very normal, happy childhood, particularly with regards to family, and I am so grateful I came from such caring, accepting people.
My Health Issues With Cleft Lip and Cleft Palate
There Were Surgeries—and Lots of Them
In terms of health, however, my childhood was very difficult. I had to have quite a few surgeries. The first one was getting my lip repaired when I was three months old. Many more followed, including two nasal repairs, two separate occasions of ear tubes, jaw surgery, tooth extractions and transplants galore, and getting a piece of bone from my hip grafted into my palate.
These surgeries were painful and scary, often making me very nervous in the weeks and days before. I remember, when I was three years old, having to be held down to be sedated for one of my ear tube surgeries because I was crying and screaming so much. I can still remember the dim, yellow lights over me in that surgery room—not at all soothing.
My Bone Graft Was the Most Significant Surgery
I also missed a lot of school because of the surgeries. I remember many times when I would sit in a hospital bed dealing with mountains of homework and trying to catch up. When I had my bone graft surgery at age nine, I missed school for an entire month. I did get to stay at the Ronald McDonald House, though, eating cheeseburgers and playing with other kids. This helped me feel a little better about my condition because I saw other kids that were going through similar things as me.
I came back to school on crutches because the bone was removed from my hip, making it difficult to walk. However, I was glad I didn't have to do PE for a while (I was never very athletic and went from being very underweight as a small child to overweight as a preteen). It was weird coming back having missed out on everything about long division and being baffled by it.
My Condition Was Shocking to Me—and to My Doctors
Doctors were often baffled by me; I went to a teaching hospital for many of my surgeries, so I met a lot of medical students who had never seen someone with my condition before. It was kind of weird going from being a normal kid to being a spectacle, an oddity, in the hospital. I know they were curious, but sometimes, it made me self-conscious when they would make a big deal of my scars and ask me to open my mouth.
When I was four, I landed on the cover of a dental magazine with my mom and grandma. I was about to receive braces for the first time even though I was just starting kindergarten. At the time, I didn't understand why I was being singled out for being different. I didn't understand why I had to be the only kid in kindergarten with braces, or the only kid with a huge scar on her lip and a speech impediment. Why me?
My Social Experiences With Cleft Lip and Cleft Palate
I Was Self-Conscious About My Speech Impediment
My social life growing up was also a struggle—more due to my low self-esteem and mental health than the bullying, although I was bullied on more than one occasion.
I now know that I had, and still have, some social anxiety issues. I was selectively mute at school and in public pretty much until college. I just felt terrified around other kids and couldn't say anything. I guess I knew I talked funny because of my condition, and I didn't want to deal with people struggling to understand me, so I just shut down.
I didn't receive any treatment because my family thought I was just shy, so I didn't really gain the confidence I needed to make many friends and socialize with people outside of my family and a few other select people until college.
I wasn’t comfortable in my own skin, and I let my social anxiety hold me back from a lot of things. I am still somewhat sheltered and naive compared to other people my age, but I am trying to progress forward and make up for lost time as an adult.
As for the bullying, for the most part, people just left me alone. Some kids would say I was inbred or looked like a troll back in middle school, but probably the worst experience was after college as an adult.
Anxiety and a Bad Breakup Dented My Confidence
I was dumped over text by the guy I had dated for almost four years, and he had said some really cruel things about every physical flaw on my body that he didn't like. It wasn’t just my cleft, although that was part of it, and it really hurt. It came out of nowhere, and the worst part was that it was coming from a person I had loved. It was way worse than a simple breakup would have been. Ever since that incident, I have struggled with my confidence and had some really bad thoughts.
I Stopped Caring About What Other People Thought
However, finding my dream job and meeting some great new friends has helped me prove to myself that I am not worthless, and there are people in my life that will love me even if he didn't. Moving on showed me that my life is worth fighting for. It has been hard, but it's getting better, and it WILL get better. I’m not going to let another person define me by my perceived shortcomings.
My Advice for Others With Cleft Lip and Palate
- A major lesson I learned from my experience is that looks are only a small part of you—they don't define you. What defines you is your strength, and I know you have developed a lot of it.
- The surgeries hurt, but they will make your life easier in the long run, and you will feel better having gone through them and survived. I know it sucks, but hang in there. It will be over soon (hospital pudding and making fun of the soap operas on TV helped me pass the time).
- If you are being bullied or if you're feeling bad about yourself, don't make the same mistake I did by bottling up your feelings and not asking for help. If you let your differences make you think you are inadequate, you will be your own worst enemy.
- It is okay to talk to other people, and it can help you to have someone that understands how you feel. There are people out there for everyone, and someone will see your beauty inside and out and want to be your best friend.
- If you are having a bad day, take the time to stop and take care of yourself. Wear something nice that you love—that makes you feel more comfortable in your own skin. Watch your favorite movie. Listen to music that helps you express your feelings. Remember the positives in your life so that you don't get overwhelmed by the negative things other people may say.
- Honestly, people will not notice your scars very often, and if they do, they probably won't say anything. If they say something bad, then there's something wrong with them because they don't see the person that you truly are.
- Remember that you are strong, you are beautiful, and you are the only person that can define you.
UNC Chapel Hill Craniofacial Team
My Advice to Parents of a Child With Cleft Lip
I am really grateful to this group of doctors. They changed my life for the better, working to make sure I was healthy and comfortable—to make sure I could feel normal.
It's also interesting to see the parents' perspectives in this video because I didn't really consider what it was like to be the parent of someone born like me.
If you're a parent, it's okay to be worried and stressed because I know it's a lot to deal with. Just work closely with your child's doctors and be there for your child.
I had a lot of issues to get through, but ultimately, I turned out okay. I'm really happy with my life now, and it's because I had so many people like my mom and Dr. Dilley supporting me.
Kids with clefts will thrive if they're given love and support, and if they're allowed to be whoever they want to be.
Operation Smile is an organization dedicated to helping people around the world with clefts, giving them access to safe surgery and quality healthcare.
I was extremely lucky to grow up in a developed country with top-notch healthcare, but there are many kids in other parts of the world that do not have the same extent of care that I had. Children are starving and dying from something that is relatively easy to fix, and it is haunting to think of how that could have been me if I were born somewhere else.
As a kid, I didn't know how lucky I was, and I wish I had appreciated my life more. Now, I want to put myself in a position to help others who are worse off. You can volunteer, donate, or simply raise awareness for people with clefts.
Further Reading: Cleft Heart by Dr. Karl Schonborn
For another perspective on what it's like to grow up with a cleft palate, this book is very informative, and I found a lot of the things Dr. Schonborn experienced to be true to my own experiences. Dr. Karl Schonborn grew up in the 1950s, but he faced a lot of the same things I experienced: bullying, self-esteem issues, and the desire to be normal. It helped seeing that I wasn't alone in what I went through, and I definitely recommend this book for anyone with a cleft to read.
Do you know someone with a cleft lip or cleft palate?
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© 2018 Melissa Clason