Making Kids Smile Again
BY PEDRO BENITEZ-CRESPO
Orofacial clefts, or simply “clefts,” are one of the world’s most common birth defects. Globally, every three minutes, a baby is born with a cleft, or about 195,000 babies each year! A cleft occurs when certain body parts and structures do not fuse together during fetal development. Clefts can involve the lip and/or the palate (the roof of the mouth). Clefts are often mistakenly considered cosmetic. In reality, babies born with clefts face a range of serious and often life-threatening issues, including challenges eating, speaking, breathing, and hearing. One of the most under-recognized dangers to babies with clefts, however, is often overlooked. We are talking about the pernicious impact of malnutrition.
Clefts can make eating, and especially breastfeeding, an intricate task. The presence of a cleft reduces an infant’s ability to create suction, making it difficult or impossible for them to get milk, and even swallow, leading to excessive air intake, choking, and gagging, as well as an increased risk of infection from the presence of milk in their lungs and airways. Without adequate nutrition in these critical months and years of development, babies and children with clefts often become underweight and at risk of growth failure and death.
Nonetheless, there are solutions. With counseling on feeding techniques, specialized equipment, and ongoing support, medical professionals and caretakers can ensure that babies with clefts can get the lifesaving nourishment they need. If a baby reaches a healthy weight and receives surgery safely, the threat of cleft-related malnutrition is removed. The challenge is getting this information and these resources to the people who need them the most. That’s why it is critical to understand the relationship between clefts and malnutrition.
So who’s tackling this pressing issue that in Mexico alone, one in every 750 babies is born with this condition?
Several players are addressing cleft lip and/or palate (CLP), and one of them is Smile Train. It is the leading international organization in the treatment of cleft lip and palate. They do so through a sustainable model that offers training, financing and resources to empower local doctors in more than 85 countries.
Smile Train is developed under the motto “teach a man to fish” which focuses on training local doctors to perform surgeries and offer comprehensive treatments in their own communities. These medical professionals can then train others, creating a long-term sustainable system.
As of today, Smile Train has enabled access to high-quality treatment for more than 1.5 million children since its founding in 1999.
I had the chance to meet Susannah Schaefer, President and CEO of Smile Train at H+ Hospital in San José del Cabo, where she held a press conference and showcased what Smile Train has done so far within the community in Mexico, particularly in the state of Baja California Sur.
“I am very happy to be in Mexico, especially in Los Cabos, to see the progress and programs that have been implemented in the region with the help of our partners. More and more boys and girls have been able to access this multidisciplinary treatment and achieve a better quality of life thanks to these partnerships. I look forward to the collective impact we will continue to have together in the future,” said Schaefer.
During the visit, she was accompanied by Dr. Alejandro González, Director of Smile Train Mexico; Marisa Comella, Executive Director of the Los Cabos Children’s Foundation; Tania Hecht, a renowned speech therapist and co-founder of ComuniCabo; Dr. Marcia Pérez, President of the Medical Advisory Council of the Caribbean, Central America and Mexico; and Dr. Jorge Pérez, representing the Health Department (Secretaría de Salud) and also Head of the pediatric unit at the “Juan María Salvatierra Hospital” in La Paz. Also at the conference were some parents accompanied by their kids, who have seen their lives change over the course of several years.
Some important takeaways from CLP are:
It is not referred to as harelip.
In the past, people used to refer to this genetic malformation as harelip, which was used due to the similarity of the morphology that these mammals (hares) have in the labial area with the condition, becoming an appellation for cleft lip or “hare’s lip”.
Nowadays, this term is sought to be modified by “cleft lip or cleft lip and/or palate”, which specifically describes this developmental defect, avoiding a morphological comparison that in a certain way becomes derogatory and does not obey proper medical language.
It is not a disability.
According to the World Health Organization (WHO), a disability is an impairment in a person’s body structure or function, or mental functioning that restricts the ability to perform an activity in the manner or within the range considered normal for a human being. CLP is perfectly reversible. With surgeries and comprehensive treatments, you can have a 100% functional life. However, if proper treatment is not provided in time, it is possible that the patient may become disabled.
It is not only aesthetic.
CLP is a malformation of one or both sides of the upper lip. In the most serious cases, this can be accompanied by a cleft palate. Since it is not completely closed, it makes it difficult to eat, leading to severe malnutrition. Patients face serious difficulties hearing, eating, speaking, and even breathing in addition to suffering from bullying and social exclusion.
Patients need multidisciplinary treatments.
Each patient has a different history and there are several types of CLP. This is why personalized care to carry out the appropriate multidisciplinary treatments is needed since it goes beyond a single surgery. Nutrition programs, dental treatment as well as speech therapy, and social and emotional support are all integral to a kid’s recovery.
For more information visit www.smiletrainla.org, or follow Smile Train on social media as “smiletrain.la” on Instagram and “smiletrainla” on Facebook.