Beth Angella does not remember much about her early surgeries as a child, she just recalls knowing that she was different. Roughly 1 out of 1,600 babies are born with a cleft lip and cleft palate in the United States, according to the CDC.
A cleft lip and palate is a birth defect. During the weeks of pregnancy, the face begins to form, and tissue joins together to complete the making of a baby’s face. However, there are times when these cells don’t completely merge together, creating a cleft lip.
Apart from this, babies can also get a cleft palate, which is essentially the same process of the tissue not merging together; however, this happens with the roof of the mouth.
Babies can either have a unilateral cleft which is just one side of their face or a bilateral cleft which is both sides of their face.
With cleft patients, the struggles can come in both mental and physical forms.
Beth, who lives in the United Kingdom, has had to live through both the physical and mental aspects of being a cleft patient all her life.
She has what is called a unilateral cleft lip and palate.
“My mother had no idea that I was going to be born with my cleft, so it was a real shock when I was born,” says Beth.
In total, Beth has undergone 10 surgeries. She had her lip repaired when she was about three months old and her palate repaired at nine months old. However, even with these initial repairs, she still had to undergo more surgeries due to complications that arose.
“I suffered with a condition called glue ear, where essentially liquid fills up behind your eardrum, and so your eardrum bursts, it’s excruciatingly painful, and it’s still one of my earliest memories,” says Beth. “To fix that I had what’s called grommets. It looks like a tiny cotton wheel, they put them in your ears, and it’s supposed to help drain the fluid.”
Glue ear is especially common in children with a cleft lip and palate, however, most children grow out of this condition at around 8 years old, according to the National Deaf Children’s Society.
Beth had two of these grommet surgeries, but in the end, besides having to do tons of hearing tests, her hearing and eardrums never had any issues since.
The rest of her surgeries are what she calls “orthodontic work.” However, Beth does clarify that “the older you get, the [more] unique everything becomes.” When cleft lip and palate patients get older, they tend to have more of a say in terms of which surgeries they want to get.
Because of this, Beth’s last two surgeries are what one can categorize as plastic surgery. Her ninth surgery, which was her septorhinoplasty, was her “favorite surgery.”
A septorhinoplasty is essentially the operation of the nose, either to change its appearance or to improve the breathing that happens through the nose, according to Health Direct.
“Essentially, that was the moment that my life changed because I could finally see myself clearly, and I could finally accept my cleft, and that’s the moment that I wrote my website.”
Beth Angella, Cleft patient and blogger
Her 10th and final surgery was her lip reconstruction. Although Beth never worried much about her lip back then, she realized that it wasn’t until she wasn’t focusing on her nose anymore that she noticed her lip. For Beth, she did not want to adopt the same feeling about her nose, so she felt like this surgery was the best option for her.
“It was nothing like the worries that I had with my nose, it was more about I’d seen it and I thought well that’s sort of a bit of a visual reminder of my cleft and I didn’t want to go back,” says Beth.
Before all of this, Beth recalls several instances from when she was younger, specifically when she was 14 years old, where people would make her feel insecure about her cleft, causing even more mental turmoil.
“I had a moment where I was in history class and the new film ‘Avatar’ had just come out, and I put my hand up… and these not very nice children at the back of the class would go ‘Avatar’ every time I put my hand up,” says Beth.
Nonetheless, Beth, six years after this instance happened, recalls a moment when she thought back to this occasion when she suddenly “felt this sort of release” and actually “[felt] sorry” for those children.
After Beth’s nose surgery, she felt like it was necessary to write down everything that she had gone through.
“Reflecting on my teenagehood, my own self-beliefs about hating myself because of my cleft, all of that, basically I just had to start writing it down,” says Beth.
Through her blog, Beth has seen “the good power of social media.” She also specifies that it’s important for others to know just how unique her journey is. Other cleft lip patients will not go through the same thing, but Beth wants to be an example for the small percentage that might.
“I was desperate to see that at 15, I was desperate to hear not about a parent talking about their child, but about another person with cleft themselves, who knew how unfair it was, who knew how difficult it was, who knew what it felt like to be an ‘other’… but then ultimately it was going to be okay,” says Beth.
Because of her blog, Beth continues to help parents and children like Willow Lund who are going through the same experience.
Willow is a 22-month-old toddler who has a unilateral cleft lip and palate. So far Willow has gone through two surgeries. However, it is estimated that, through the course of her life, she will have to go through seven or eight more.
Children with a cleft lip and palate may not grow up having speech issues. However, some are still given a speech pathologist to work with them to avoid issues regarding articulation of words, according to kidshealth.org.
Her mother Alyssa Lund, a former special education teacher, says, “When I heard that Willow was going to have a cleft, I wanted to make sure that she could communicate her basic needs at least as a baby so I started teaching her [sign language] really young.”
As of now, Willow does not have any special needs in terms of speech, however for her mom, it was important for her to make sure that Willow could communicate with her so that no behavioral issues would arise.
The most prominent issue that arrived with Willow’s cleft was being able to eat. Alyssa recalls how Willow had to be fed in a specific way so that the milk she was drinking would drain away from her cleft so that it wouldn’t go up into her nose. Apart from this, as Willow started getting older and feeding on solid foods, her soft palate was still open, so whenever she would eat and sneeze or spit at the same time it would come up through her nose, causing messy disasters for her.
Through all of this, Alyssa says, “It was just not your typical newborn experience.” She remembers the times when she had to unintentionally cause her baby pain, like massaging her scar after her surgery and even inserting nose stents to make sure that Willow was breathing properly.
As a first-time mom with this experience, Alyssa knew it was crucial to create an Instagram account to document their journey.
“I thought if I could create an account and help just one mom out there, to see what it’s like to know that it’s going to be okay to know that yes, it is hard but that I’m there to help you, to just have that support and have someone that knows exactly what they’re going through.”
Alyssa Lund, Mother
Through Instagram, Alyssa is making sure to teach Willow about self-love as she continues to get older, assuring her that she is special because of her cleft.
“You are so special and you are so unique, you have something that a lot of people don’t, you have experiences that a lot of people aren’t going to go through. You have more empathy and sympathy for kids who have to go through surgery, for kids who spend time in hospitals…although it’s so hard, it’s such a blessing too.”
Sources: CDC, Beth’s Cleft Lip and Palate, National Deaf Children’s Society, Health Direct, KidsHealth
Images: Provided by Beth Angella and Alyssa Lund
