comprehensive nursing management of the infant with cleft lip and palate
DESCRIPTION
Comprehensive Nursing Management of the Infant with Cleft Lip and Palate. Patricia Chibbaro, NP Pediatric Nurse Practitioner Institute of Reconstructive Plastic Surgery NYU Langone Medical Center. Cleft Lip and Palate. Incidence 1:350 - 700 Unilateral/Bilateral Incomplete/Complete - PowerPoint PPT PresentationTRANSCRIPT
Patricia Chibbaro, NPPediatric 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 Surgeon Orthodontist Prosthodontist Pedodontist Otolaryngologist Psychologist Geneticist Primary Care
Provider
Nurse/Practitioner Speech/Language
Pathologist Team Coordinator Social Worker Audiologist
Prenatal Counseling Consult to birth
hospital Feeding instruction Pre/post-op teaching Pre-op H/P, Consent Post-op inpatient
management Resource to pediatric
nursing/housestaff
Cleft Palate Team Member
Patient Resource, Advocate, Case Manager
Community Outreach/Education
Liaison with Community Health Care Providers
• 1981- 1st reported ultrasound cleft detection
• 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 CleftComplete Unilateral Cleft
Obtain pregnancy history, delivery plans and info re: family structure/resources
Clarify info from prenatal meetings w/genetics, surgeon/other cleft team members
Clarify internet information! Review pre/postop photos Discuss/demonstrate feeding
options/provide samples and ordering info
Offer advice re: explaining diagnosis to family, friends, siblings
• 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 experience/prevent overtreatment
• Provide cleft team contact info for family/staff to call after birth
Prenatal Consultation Nursing Care During Labor and
Delivery Newborn Nursery/NICU Care Postpartum Nursing Care Pediatric Nursing Care of the Surgical
Patient 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 information
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 cleft
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
The normal process of feeding involves an intact and coordinated sequence
Sucking/swallowing/breathing
Poor Oral Suction Poor Intake Lengthy Feedings Nasal Regurgitation Choking Gagging Excessive Air Intake Poor Weight Gain Excessive Energy Output Stressful Feeding Intake
A cleft makes it difficult for infant to form the seal necessary to create negative intraoral pressure/suction
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 problems