Sarah's story, from her cleft lip and palate to her fulfilled dream of playing the flute (and beyond)

«Today I have the smile I dreamed of. But this cost effort, suffering and sacrifice on my part and on my family's part, who were decisive in my journey, together with the medical team that treated me.” Sarah is 18 years old and today she is no longer ashamed to show her smile. But it wasn't always like this: Sarah was born with the pathology of cleft lip and palate, detected already during ultrasound scans in the mother's belly, a malformation that presents with an interruption – cleft, precisely – of the upper lip, gum and palate.

We heard a lot about it in conjunction with the delicate operation that the little girl had to undergo Blue Jerusalemadaughter of the entrepreneur Gianluca Vacchi, almost three years ago now: she was operated on to correct the cleft palate. Today the little girl, who recently turned 3, is fine.

But what do these malformations consist of? And how did Sarah experience the entire process of caring for her, which began right from the moment she was born? Before telling her story, we asked for clarification Operation Smile Italia ETS Foundation, association specialized in the surgery and treatment of cleft lip and palate, to take stock of this pathology which affects many people.

What is cleft lip and palate?

Cleft lip and/or palate is one congenital malformation of the face and oral cavity. It is characterized by failure to merge, during intra-uterine life, of the structures that make up the lip and palate. Cleft lip and palate can be unilateral or bilateralbut it can also present itself as mixed form.

The forms in which the cleft exclusively involves the upper lip are defined cleft lip (commonly known as cleft lip), cleft palate cleft that exclusively involves the palate.

30% of children with cleft lip and palate and 50% of children with cleft palate have other associated anomalies and presents a syndrome 1.

What are the causes of cleft lip and palate?

The causes of this type of malformations are unknown and are considered to be attributable to one combination of genetic and environmental factors. This defect occurs during pregnancy, usually between the 4th and 12th weeks of gestation. The incidence figure is estimated to be 1 case every 750-800 children.

How is it treated?

Every case of cleft palate you hate cleft lip must be evaluated by the medical team, so as to outline the most suitable treatment path for each patient. Surgical treatment may involve one or more interventions. In cases where the cleft palate occurs together with the cleft lip – that is, in cases of cleft lip and palate – there are at least two surgical interventions: the first for the lip and the second for the palate.

The first surgery takes place around 6 months, when the child has reached a stable weight. In the presence of unilateral clefts, with reduced width of the cleft of the hard palate, during the first surgery it is possible to proceed with the closure of the palate as well.

The second completion intervention consists of bone grafting and will take place around 8-10 months. In the larger unilateral and all bilateral forms, during the first operation, the child is subjected to correction of the lip, nose and closure of the soft palate, leaving the hard palate and gums open.

In the second intervention, around 24 months, the closure of the palate and gums will be completed. The precise moment in which to carry out this second intervention depends on the stage of maturation of the dental elements.

The case is different cleft palatesince it is treated with a surgical operation which is usually performed between 10 and 12 months of life of the child and in most cases, a single surgery is sufficient. Cleft palate can be associated with other pathologies, such as dental or phonation problems that require assistance in the field of orthodontics or speech therapy.

Sarah's story

Sarah's it is a story of painbecause the disease always involves, but also of union and truth. That truth that allows you to be aware of the steps to take, removing the fear of not making it.

«I had it left unilateral complete cleft lip and palate. Discovered by ultrasound, even before I was born, my parents went to the Regional Center for Cleft Lip and Palate of the San Paolo hospital in Milan, specialized in the treatment of my pathology. That conversation allowed them to arrive at the moment of my birth quite calmly, because they knew that, after a few days, I would begin my treatment journey.”

What do you remember about the disease?
«The first real memory is linked to the hospital, a surgery. While I was waiting for them to call me to go to the operating room, I read a little book with my mother, Martino the cat: I remember that I felt calm and not at all worried and it would also be like this for subsequent operations. The interventions to which I was then subjected in everything, there were four».

Why was she so calm? What contributed to her serenity, in your opinion?
«Since I was little, my parents they spoke to me clearly and directly of the cleft lip and palate, explaining to me more and more in depth as I grew up, the surgical interventions performed and the path ahead of me. They always emphasized that my situation was constantly evolvingand that this meant continuous aesthetic changes, but not only that.”

Was his family togetherness part of the cure, then?
«My family was and still is crucial: at every moment I found their support, their smile and many hugs, because we went through all of this together. They believe in me a lot and this allows me to feel stronger and more determined in overcoming obstacles. With my mother, in particular, I shared every single moment of my treatment journey, because she was with me during my hospital stays and always accompanied me to visits, trying to make all the moments of the journey pleasant with lots of chatter and laughter. ».

There must have been some difficult moments along the way, however, I imagine…
«During preadolescence and adolescence, yes: I didn't feel completely confident about myself because of the way I looked. My meeting with the Doctor Meazzini (the doctor Maria Costanza MeazziniOrthodontics Coordinator of the Regional Center for cleft lips and palates of the ASST Santi Paolo e Carlo in Milan, ed.) was fundamental. I wore various devices that, today, allow me to have the smile I dreamed of».

How important was it for you to have a good relationship with your doctor?
«Dr. Meazzini, in addition to treating me in the best possible way, he listens to me and understands and always invites me to believe in myself and my abilities. During the hospital visits the doctors were very clear with me, explaining the surgical interventions and orthodontic treatments in simple words, so that I could understand the treatment process and what I would face.”

Has this awareness helped you in life, as well as helping you deal with treatment better?
«Yes, it allows me to explain to others the various situations I find myself experiencing, making everything simpler and more direct. Even the fact of having attended one middle school with a musical focuswhere I started to play the transverse flute, it allowed me to prove to myself that my pathology, with appropriate care and a lot of commitment, it did not represent an insurmountable obstacle in my life. I have to say thank you to the outstanding music teachers who they believed in me beyond all expectations».

Music saved her, in short…
«I started playing the flute just as I was wearing the expander, an orthodontic appliance, you think… It wasn't easy at all, in fact, in some periods even quite painful. But I didn't give up and it was precisely in those difficult moments that my passion for music was strengthened, so much so that today I also play the harp.”

Do you think your story would have been just as happy if you hadn't had adults and professionals at your side who knew how to go beyond appearances?
«I owe a lot, indeed I owe everything, to the doctors who took care of me throughout the treatment process. My visits to the ward have been numerous and each time I have found a familiar environment welcoming me, where everyone is always kind and courteous to me. If you ask me what they are my heart doctors, I feel like naming two great people: Doctor Autelitano (Luca Autelitano, Surgery Coordinator of the Regional Center for cleft lip and palate of the ASST Santi Paolo e Carlo of Milan, ed.) and the Doctor Meazzini, because I really opened my heart to them, explaining to them what made me suffer from my pathology. In return I received solutions on all levels, both on the treatment level and on the emotional level. When I arrive in Milan for a visit I am sure that I will find them in the ward to welcome me with a hug and a smile. Can I reiterate something?”.

Please tell us…
«In my heart, I have Doctor Meazzini: for me she is really a friendly personwho knows me deeply, to whom I have often told my worries, my insecurities, finding full understanding and sincere encouragement not to give up. I owe a large part of the confidence I have in myself today to her, has always cheered me up in difficult moments and encouraged me to move forward with determination because the results would come. In fact, it was exactly like that.”

We know that cleft lip and palate is a congenital pathology, which therefore affects some children from birth: well, what do you feel like telling young patients?
«Based on my experience I would recommend to young patients with cleft lip and palate live the present as peacefully as possible and have great faith in the future, because, if you choose the right reference centre, you are not alone. It's crucial too follow the directions carefully which are given after surgical interventions and during orthodontic treatments, for the success of the treatments.

Instead, I would like to say to the kids born with my pathology try to be yourself day after day, to build a future according to your aspirations, without having limits placed on you by those who don't know us and risk, mistakenly, judging us with prejudice. It is not easy in certain periods of life to show ourselves to others with a face that does not yet represent us; furthermore, unlike what many people think, it is not a pathology that has an impact only on an aesthetic level, but has related functional problems. But it is precisely in difficult moments that we need to be strong, remembering that the path undertaken since birth, in the right times, leads to great results.”

What dreams do you have, Sarah?
«Today I dream of continuing my musical studies in the coming years at the Conservatory. I consider myself lucky, because I have had the opportunity to be treated by extraordinary doctors, but I know that not all children born with a cleft lip and palate have the same possibilities as me, because in some countries around the world there are no centers like mine (the Milan Treatment Center c/o ASST Santi Paolo e Carlo is the only one in Europe with a high specialization in the treatment of facial malformations, ed.), to refer to. This thought makes me suffer. My biggest dream, in reality, is that for all children there is the possibility of being treated well, as there was for me.».