Prenatal cleft palate: To know or not to know

Let’s say you’re expecting. It’s time for the first ultrasound. Suppose the test reveals that your baby will be born with an orofacial abnormality; a cleft lip and/or cleft lip and palate diagnosis.

Would it help to know?

The diagnosis of an unexpected medical condition can bring great emotional stress; yet it can also offer time and opportunity to prepare for a new baby’s unique needs.

Study authors interviewed 235 mothers of children aged 2 to 7 years with orofacial clefts. Of these children, 46% had been identified in utero with cleft lip or cleft lip and palate.

Early planning for a child’s condition could allow parents to seek information and counseling or find resources. An appropriate cleft care team—including a surgeon, dental professional, and speech professional—could be identified in advance.  Many established cleft care teams hold prenatal consultations with parents expecting a baby with an orofacial cleft.

Parents can make necessary emotional and medical adjustments with an early diagnosis, and they can also decide whether to make changes in work schedules, health insurance, and child care plans.

Yet those with early knowledge of the condition did not report greater satisfaction with information, support, and treatment outcomes, even though they had more time to learn and prepare. The study found little difference between mothers who were told about their baby’s diagnosis before the birth, and those who found out after the baby was born.

The study, reported in the September 2010 issue of The Cleft Palate–Craniofacial Journal did show a significant difference in terms of feeding issues. Infants born with orofacial clefts have unique feeding requirements due to the abnormality.

Parents who were given an early diagnosis reported more positively about providers’ help in feeding the baby- which can be difficult and anxiety ridden for untrained providers and new parents.

Noah Gumler was born with cleft palate, a facial abnormality requiring surgical repair. His parents, Rolando and Khonnie, found out that Noah would have a cleft lip after an ultrasound at 20 weeks. They talk about how they discovered the news, and share the ultrasound image as well as Noah’s post surgery photos in the slideshow below.

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