Prenatal Counseling and Delivery Preparation for Families Expecting a Baby with Cleft Lip and Palate

Cleft lip and palate occurs very early in pregnancy, often before a woman knows she is expecting. Second only to hearing a baby’s heartbeat for the first time, the ultrasound visit is a much-anticipated milestone during pregnancy when the parents get to see their baby for the first time. In the ultrasound suite, those feelings of anticipation and excitement may quickly turn to fear when an ultrasound reveals a cleft lip. The question may turn from, “We wonder WHO our baby will look like?” to “We wonder WHAT our baby will look like?” and “Is this our fault?”

In partnership with the coordinators in the Center for Fetal Diagnosis and Treatment, the Plastic Surgery nurse coordinator at Children’s Hospital of Philadelphia has an important role in addressing many of the fears associated with a prenatal finding, as well as preparing families for caring for their child after delivery.

We assure families that this condition is no one’s fault, it is something we can fix, we take care of babies with cleft every day, and we are here to support them in whatever way they need.

During the introductory consultation, families are provided with:

• A post-delivery plan, which includes instructions to call the nurse coordinator shortly after birth and follow up in person within two weeks with the plastic surgery clinical team
• Education on how to feed their baby, including specially designed bottles for babies with cleft palate to take to the hospital in their “go bag”
• An introduction to the CHOP Cleft Lip and Palate Program, clinical providers, and the multidisciplinary concept of care
• A list of resources for additional education and information about local support groups
• Most importantly, reassurance that the plastic surgery team will be available at any time to provide support

After delivery, the nurse coordinator serves as the point person and care coordinator, collaborating with the child’s pediatrician to monitor feeding and weight gain, coordinating specialty appointments, and providing continued psychosocial support to families as they prepare for surgical reconstruction, and throughout the course of their care.

Feeding and weight gain can be the biggest challenges for these babies and their families. If the cleft is only in the lip, it is not very wide and the baby can successfully latch, they can attempt breastfeeding. Babies with wide cleft lips and those who have cleft palate struggle with breastfeeding because it is like they are sucking out of a straw with a crack in it. Though they may look like they are latching, sucking and swallowing, they fail to get the proper nourishment. As a result, they become hungry all the time and start to lose weight. For these infants, we recommend families use the specially designed cleft palate bottles so the child gets the calories they need to grow. After the baby is fed, the mother can do non-nutritive nursing to encourage bonding and to help keep up the milk supply.

For more educational resources on this topic, visit the American Cleft Palate-Craniofacial Association Family Services site.