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It takes a great medical team to navigate the cleft journey

It takes a great medical team to navigate the cleft journey

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We can all appreciate a smile during these pandemic times when our mouths are often masked. Restoring smiles to the faces and hearts of children born with cleft lips and palates is the everyday mission of a team of multidisciplinary professionals at University of Utah Health.

These birth defects occur when the baby's lip or mouth do not form properly during pregnancy. The journey to correct these conditions can be a challenging one for children and their families. But with the support of a caring group of surgeons, pediatric orthodontists, speech therapists and social workers, a child with a cleft can meet important milestones in their physical, social and emotional development.

Barbu Gociman, MD, Associate Professor of Plastic Surgery at University of Utah Health and Co-Medical Director of the Cleft & Craniofacial Center at Intermountain Primary Children's Hospital. He explained the complexity of the cleft journey that often takes a child from birth into their late teens. "It is not a simple clinical solution where you just have one operation, and everything is done. It is a longer process where you have a series of operations and non-surgical interventions to get the best possible outcome for the children who are affected by these conditions," said Gociman.

In most cases, the diagnosis of cleft lip is done prenatally during an ultrasound. It is much harder to identify a cleft palate before a baby is born. However, once a diagnosis is made, the cleft team mobilizes to ensure the baby has every opportunity to grow like a normal child. Most often, the cleft baby's lip, gum, and hard and soft palate are all involved in their condition. So, Gociman and his team will work with a feeding specialist to ensure these infants get the nutrition and calories they need in the first months of life.

The plastic surgeons begin their work when the baby is around three months old and has grown enough to withstand the effects of anesthesia. The first series of surgeries are done to reconstruct the lip and nose and restore the form and function of the soft palate which directly affects speech. These are life-changing operations, but they are just the first steps in the cleft journey.

Dana N. Johns, MD, is another plastic surgeon on the cleft team at U of U Health and Intermountain Primary Children's Hospital. She shared her experiences working closely with these special patients. "Rarely do you have the opportunity to act as a surgeon, and as a primary care physician, meaning that you get this longevity of care that you don't often see in most surgical specialties. We are with them for 18 to 20 years of their lives."

At every step of their growth and development, Johns and Gociman check to make sure their patients are physically and mentally strong enough to meet the challenge of another surgery. "We identify kids who are maybe struggling in school, or maybe being teased or bullied, and if they have a big surgery coming up, then we know we need to do some mental health preparations with them because it certainly is not going to get easier as they are recovering from some of these surgeries. It just gives us the ability to make sure we are taking care of these kids from head to toe and inside to out, instead of just focusing on fixing the anatomic problems," said Johns.

The team approach to treating children with cleft lip and palate is far-reaching in the services it covers and offers. Johns emphasized, "The way that we make sure that we are caring for all the needs for these patients is, at least once a year, we see them in our multidisciplinary clinics. So, as surgeons, we often see the patients more because we have pre-operative appointments and post-operative appointments surrounding their surgeries." Johns listed some of the disciplines that are represented on the team including, craniofacial plastic surgeons, ear, nose and throat surgeons, speech pathologists, social workers, a nurse coordinator who runs team logistics and a nurse practitioner who provides the primary care for the children.

There are other important medical professionals who are not necessarily on the cleft team but step in to help when necessary. "We do have close contact with those who provide the therapeutic care, so psychologists and psychiatrists. There are some special mental health issues that these kids often have to deal with because of that social stigma of having a cleft," said Johns.

The cleft team individualizes a plan for each patient's care and treatment over time and brings the family into the process. Doctors believe this is particularly important for parents who have never had a child with a condition that requires long-term treatment by multiple healthcare professionals. Johns said, "For parents, having that peace of mind to say here is the step we have to get to next, and here's where we are going, and it's going to be ok because we can sort of take one step at a time."

It might be hard to believe but a girl's face is not fully grown until age 16 and for boys, it is around 18 years old. These facts explain why the child with a cleft is with their team from birth to young adulthood. It is also why Gociman says the professional cleft team model has been so effective in producing successful results for cleft patients. "We want every patient that comes and gets care here to ultimately be as close to normality as possible once the treatment is completed," said Gociman.

Ultimately, Gociman, who is also a geneticist, would like to solve the mystery of what causes cleft lip and palate. In the United States, about 1 in every 1,600 babies is born with these birth defects, according to the Centers for Disease Control and Prevention. Gociman has been researching these conditions for several years now and continues to explore the genetics of clefts.

"To this point, nothing really conclusive has been discovered that would explain the majority of clefts. The genetics of cleft remains elusive despite a lot of efforts to try and identify the genetic condition," said Gociman. Without a cause or means of prevention, doctors like Gociman and Johns remain focused on using best treatment practices to give their patients a bright future and a reason to smile.

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