The Importance of Prenatal Cleft Lip and Palate Visits: The Parents’ Perspective

Posted on November 16, 2017

With the advancements of two- and three-dimensional ultrasounds, diagnosing cleft lip or palate in utero has an extremely high accuracy rate. The ability to know that a baby will be born with cleft lip or palate offers parents the opportunity to research and prepare for the ongoing treatment needed by their child. It also allows them to interview and choose their own surgical care team prior to birth. The question then becomes, what is most important to parents when speaking with potential surgeons?

Researchers from the McGovern Medical School at the University of Texas Health Sciences Center at Houston (Texas) and the Children’s Memorial Hermann Hospital (Houston, Texas) recently published a study in The Cleft Palate–Craniofacial Journal that focuses on how parents choose the cleft surgical care team for their newborns, and what information is most important to parents when learning about their child’s treatment plan.

An online survey was conducted, in which 112 parents responded. The survey was based on the following factors: (1) experience and personality of the surgical team, (2) distance between the hospital and the family’s home, (3) amount of time the surgeon spent with the family prior to surgery, (4) reputation of the surgeon’s hospital, (5) reactions to prior patient photographs (pre- and post-surgery), and (6) overall outcomes.

The researchers found that of the parents surveyed, 77% had a prenatal visit with a surgeon or surgical care team, and 30% of those parents decided to interview more than one surgeon or team. During the visits, 42.5% of parents were most concerned with surgical treatments, and 37.5% with newborn feeding techniques. The longer-term treatment plans that dealt with speech and genetics did not seem to be as high of a priority at the prenatal visits. When choosing a surgical care team, the team’s age, experience, and personality mattered more to parents than the hospital’s distance, the before and after photographs of previous patients, and time spent at the visit.

With the advancements of ultrasound technology, parents are able to better prepare for life with a child born with cleft lip or palate. In this study, the researchers also found that 95% of parents were doing their own online research not only of surgical care teams, but also of treatment plans and expectations. With the abundancy of information readily available via the Internet, it is imperative that surgeons know and understand parents’ top concerns and spend time addressing those concerns at prenatal visits.

One researcher states, “Our goals are to give our parents all the education and information that they need prior to delivery, so that when their child arrives they are fully prepared to handle the specialized issues that children with cleft lip and palate face. We hope that this additional information will reduce the stress and worry that all new parents experience and allow them to enjoy the miracle of their new infant.”

Full text of the article, “Survey of Parent Experiences in Prenatal Visits for Infants With Cleft Lip and Palate,” The Cleft Palate–Craniofacial Journal, Vol. 54, No. 6, 2017, is available at http://www.cpcjournal.org/doi/full/10.1597/16-036.

 

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