Management of the Infant with Cleft Lip and Palate

Patricia Chibbaro, NP
Pediatric Nurse Practitioner
Institute of Reconstructive Plastic Surgery
NYU Langone Medical Center
 Incidence
1:350 - 700
 Unilateral/Bilateral
 Incomplete/Complete
 +/- Alveolus (primary palate)
 +/- Hard (secondary) palate
 +/- Soft (secondary) palate
 Isolated hard and/or soft palate
 Submucous cleft palate
 Pierre Robin Sequence
Mandibular Micrognathia (Mild – Severe)
 Retropositioning
 +/-
of the Tongue (Glossoptosis)
Cleft Palate
 May Require Intubation,Tracheostomy
 May Require Gastrostomy
 Plastic
 Orthodontist
 Prosthodontist
 Pedodontist
 Otolaryngologist
 Psychologist
 Geneticist
 Primary Care Provider
 Nurse/Practitioner
 Speech/Language
 Team Coordinator
 Social Worker
 Audiologist
 Prenatal
 Consult to birth
 Feeding instruction
 Pre/post-op teaching
 Pre-op H/P, Consent
 Post-op inpatient
 Resource to pediatric
 Cleft
Palate Team
 Patient Resource,
Advocate, Case
 Community
 Liaison with
Community Health
Care Providers
• 1981- 1st reported ultrasound cleft
• Routine or high resolution sonogram
• Transvaginal: early as week 12
• Week 14 – facial contour almost complete
• Transabdominal: 16-22 weeks (time of 1st
routine ob sonogram)
• Ideal detection is at 20-22 weeks
• MRI (usually done to look for other abn)
• Incomplete clefts often not seen until 3rd
trimester us
• Studies report associated birth incidence: 4.3 63.4%
• Mild (skin tags)- lethal deformities (trisomy)
• 350 reported associated syndromes
• Most common – CNS, skeletal, urogenital, CV
• Critical to refer couple for prenatal consult!
3-D Sonogram
Complete Unilateral Cleft
Obtain pregnancy history,
delivery plans and info re:
family structure/resources
Clarify info from prenatal
meetings w/genetics,
surgeon/other cleft team
Clarify internet information!
Review pre/postop photos
Discuss/demonstrate feeding
options/provide samples and
ordering info
Offer advice re: explaining
diagnosis to family, friends,
Network to other parents
Preparation for NAM therapy
Briefly explain expected
hospital/postop/home care
following initial cl/p surgeries
Refer to Cleft Palate
Foundation-Cleftline, Website,
Feeding Video
Provide team literature/website
Encourage parents to
communicate with birth hospital
pre-delivery – optimize
Provide cleft team contact info
for family/staff to call after birth
 Prenatal
 Nursing Care During Labor and Delivery
 Newborn Nursery/NICU Care
 Postpartum Nursing Care
 Pediatric Nursing Care of the Surgical
 Pediatric nurses in the community
 The Cleft Team Nurse Specialist/Nurse
Coordinator/Nurse Practitioner
 Goal
is to optimize the labor/delivery
experience – parents will remember their
nursing care
 Parents may know that the baby will be born
with a cleft
 If cleft not prenatally diagnosed, important
to support parents immediately/provide
 Be aware of your reaction to the infant
 Unless infant is premature, has cardiac or
airway problem, allow parents to hold/bond
 Try
to place infant in newborn nursery
unless premature or with cardiac or
airway problems
 If rooming-in is available and infant is a
candidate, it should be offered
 If most experienced RN feeders are in the
NICU – that would be an indication to
place infant there
 Do not place infant in the back of the
nursery to avoid “the cleft” being seen
 If baby is in NICU, do not overtreat (i.e.
IV, feeding tube) just on the basis of the
Sensitivity to Parental Response to Baby
(especially if cleft not detected prenatally)
 Parents will take cues from nurse
 Feeding – assess their knowledge, provide cleft
bottles, breast pump, lactation consultant, CPF
feeding video
 Feeding – if cleft palate, unlikely to be able to
directly, exclusively nurse – do not pressure them
to do so
 Referral to a team, especially if cleft not
detected prenatally
 Discharge planning – feeding supplies, home
nursing visit, follow-up appt. with team and
primary care provider
normal process of feeding
involves an intact and coordinated
Poor Oral Suction
 Poor Intake
 Lengthy Feedings
 Nasal Regurgitation
 Choking
 Gagging
 Excessive Air Intake
 Poor Weight Gain
 Excessive Energy Output
 Stressful Feeding Intake
cleft makes it difficult for infant to form the
seal necessary to create negative intraoral
 Cleft Lip – prevents formation of anterior seal
on nipple
 Cleft Palate – prevents formation of seal within
oral cavity needed to create suction
 Even small clefts of soft palate/submucous
clefts (often missed) can cause feeding