What information can I learn prenatally?
In recent years, it has become common for expectant parents in the US to learn of a cleft diagnosis during pregnancy. An ultrasound, also called a sonogram, is a scan that can detect a cleft lip as early as the 20th week of pregnancy. Sometimes a cleft in the gumline can also be detected via ultrasound at that time.

While a cleft lip is usually visible using ultrasound, a cleft palate is more difficult to detect using this technology, even at the 20th week of gestation. Recent research shows that magnetic resonance imaging (MRI) can detect cleft palate more accurately than ultrasound. Large hospitals and university medical centers are good resources for the most advanced technology and expertise.

Will my baby have birth differences beyond CLP?
Cleft lip and/or palate can occur alone, called isolated, or along with other birth differences, as part of a syndrome or another craniofacial condition. Of all babies born with cleft lip and palate, ten to 15% are diagnosed with additional differences, with the risk likely being slightly higher for babies born with cleft palate only. Your doctors can gather more information during pregnancy and after birth to help you learn more.

Citations:

American Cleft Palate Craniofacial Association. Prenatal Diagnosis. ACPACares.org. Accessed September 1, 2024. https://acpacares.org/resource-center/.

Diaz Perez KK, Curtis SW, Sanchis-Juan A, Zhao X, Head T, Ho S, Carter B, McHenry T, Bishop MR, Valencia-Ramirez LC, Restrepo C, Hecht JT, Uribe LM, Wehby G, Weinberg SM, Beaty TH, Murray JC, Feingold E, Marazita ML, Cutler DJ, Epstein MP, Brand H, Leslie EJ. Rare variants found in clinical gene panels illuminate the genetic and allelic architecture of orofacial clefting. Genet Med. 2023 Oct;25(10):100918. doi: 10.1016/j.gim.2023.100918. Epub 2023 Jun 15. PMID: 37330696; PMCID: PMC10592535.

Wurfbain LF, Cox IL, van Dooren MF, Lachmeijer AMA, Verhoeven VJM, van Hagen JM, Heijligers M, Klein Wassink-Ruiter JS, Koene S, Maas SM, Veenstra-Knol HE, Ploos van Amstel JK, Massink MPG, Mink van der Molen AB, van den Boogaard MH. Diagnostic Gene Panel Testing in (Non)-Syndromic Patients with Cleft Lip, Alveolus and/or Palate in the Netherlands. Mol Syndromol. 2023 Aug;14(4):270-282. doi: 10.1159/000530256. Epub 2023 Jun 8. PMID: 37589029; PMCID: PMC10425715.

Zhai J, You S, Liang Z, Yu H, Zhu C, Han L. Diagnostic Potential of Complementation of MRI to Prenatal Ultrasound for Detecting Orofacial Clefts in High-Risk Fetuses: A Network Meta-Analysis. The Cleft Palate Craniofacial Journal. 2024;0(0). doi:10.1177/10556656241231119

Page reviewed by Scott Hickey, MD; ACPA Family Resources Committee