1 When the Diagnosis is Unexpected: The Fetal Diagnostics Program at Nationwide Children’s Hospital Becky Corbitt RN, MSN, CNL Kamil Cak, M.Div., BCC Course Objectives • To familiarize the learner with various aspects of the Fetal Diagnostics Program • To familiarize the learner with psychological impact on families going through the program • To familiarize how family centered care is incorporated into the program Disclosures • We have no perceived financial, professional or personal conflict of interest • We are not discussing any off label uses March of Dimes: Statistics • In the United States birth defects have been the leading cause of infant mortality for the past 20 years, accounting for 1 in 5 infant deaths • 3% of live births in the United States are born with major birth defects • Overwhelming amount of stress and anxiety for the parent/family Program Goals • To provide education and support to families who are expecting a child to be born with a congenital anomaly • Optimize maternal & neonatal outcomes • Promote seamless transition from prenatal to postnatal care • Team Approach: Involving all aspects of the health care team Nurse and Family Support Coordinator Roles • Supports the family during the prenatal and neonatal care • Helps answer questions/concerns • Provides education about the diagnosis • Coordinates referrals to pediatric specialists for prenatal consults • Tours of neonatal intensive care unit • Social services consult • Constant communication and coordination of care with all health care members
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When the Diagnosis is Unexpected:
The Fetal Diagnostics Program at
Nationwide Children’s Hospital
Becky Corbitt RN, MSN, CNL
Kamil Cak, M.Div., BCC
Course Objectives
• To familiarize the learner with various aspects of the
Fetal Diagnostics Program
• To familiarize the learner with psychological impact
on families going through the program
• To familiarize how family centered care is
incorporated into the program
Disclosures
• We have no perceived financial, professional or
personal conflict of interest
• We are not discussing any off label uses
March of Dimes: Statistics
• In the United States birth defects have been the
leading cause of infant mortality for the past 20
years, accounting for 1 in 5 infant deaths
• 3% of live births in the United States are born with
major birth defects
• Overwhelming amount of stress and anxiety for the
parent/family
Program Goals
• To provide education and support to families who
are expecting a child to be born with a congenital
anomaly
• Optimize maternal & neonatal outcomes
• Promote seamless transition from prenatal to
postnatal care
• Team Approach: Involving all aspects of the health
care team
Nurse and Family Support Coordinator Roles
• Supports the family during the prenatal and neonatal care
• Helps answer questions/concerns
• Provides education about the diagnosis
• Coordinates referrals to pediatric specialists for prenatal consults
• Tours of neonatal intensive care unit
• Social services consult
• Constant communication and coordination of care with all health care members
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Columbus Fetal Medicine Collaborative Columbus Fetal Medicine Collaborative
• Mount Carmel, Ohio Health, Ohio State and Nationwide Children’s have all come together to form one Fetal Center
• To provide optimal outcomes for high risk expectant mothers and their babies with suspected fetal abnormalities
• Addressing the needs of both mother and child with a seamless, integrated approach to services
• Bridges the gap between Maternal Fetal Medicine specialists and pediatric specialists at Children’s
• Creates a more efficient way to handle complex patients
• Marketing strategy promote program
• Research opportunities
Comprehensive Range of Specialists
Columbus Fetal Medicine Collaborative
� Maternal Fetal Medicine
� Pediatric Surgery
� Cardiology
� Cardiothoracic Surgery
� Neonatology
� Neurosurgery
� Craniofacial Surgery
� Neurology
� Clinical Genetics
� Urology
� Hospice and Palliative Care
� Otolaryngology
� Orthopedics
� Comprehensive care for Myelomeningocele
• Pediatric specialist will discuss the fetal diagnosis, anticipated recovery, and potential outcomes with families during the prenatal consult
1-866-978-CFMC (2362)
Website: ColumbusFetalMedicine.org
patient information and referring process
Ability to use teleconference to discuss complex cases and
monthly case conferences
Columbus Fetal Medicine Collaborative
Technology: The wave to the future in Fetal Medicine
Fetal MRI
Fetal ECHO
Level 2 Ultrasound
• Technology has helped
to diagnose defects
prenatally.
Common Fetal Diagnoses
• Abdominal wall defects including Gastroschisis, omphalocele, cloacal exstrophy
• Lung malformations (CCAM and pulmonary sequestration)
• Congenital diaphragmatic hernia
• Congenital anomalies of the central nervous system including neural tube defects, hydrocephalus
• Congenital anomalies of the face: cleft lip and palate
• Orthopedic anomalies: club feet,
• Urologic anomalies
• Genetic and metabolic diseases and disorders
• Congenital heart defects
• Congenital intestinal anomalies
• Skeletal dysplasias
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Information
Positive/negative
FinancialStressors
Emotional/
Psycho-social
Stressors
Support System
Positive/
Negative
Heath Care Continuum
FamilyFamilyFamilyFamily&&&&
UncertaintyUncertaintyUncertaintyUncertainty
Physical/HealthStressors
Psychosocial Aspects of Care Financial Impact
• Out of pocket medical bills
• Insurance coverage issues
• Transportation costs
• Child care expenses
• Loss of income or loss of job due to time off work
To assist with financial challenges
• Schedule appts on days that are best for pt’s life
• Consolidate appts for fewer trips
• Refer to local social service agencies
Resources for Families
• Welcome Center
• Ronald McDonald House
• Family Resource Center
• Club House
• NCH Library
• Chapel
• Social Workers and Case Managers
• Chaplains
• Parent Advisors
Stages of Grief: Kubler-Ross
• Intended for the processing of one’s own death
• Denial (This isn't happening to me!)
• Anger (Why is this happening to me?)
• Bargaining (I promise I'll be a better person if...)
• Depression (I don't care anymore.)
• Acceptance (I'm ready for whatever comes.)
The Search for Meaning and Stages of Grief
• Illness leads to a search for existential meaning
• Prior to illness:
• Good things happen to good people
• Bad things happen to bad people
• Bad things sometimes happen to good people,
but they happen to someone else
• Therefore, illness is initially met with denial
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Denial
• “This is not really happening to me”
• “They have the diagnosis wrong”
• “God will perform a miracle and heal my baby”
• If a miracle occurred, the patient could return to her
prior schema and regain a sense of meaning
• Denial prevents patients from hearing
• Expressed by not coming to appointments or not
wanting to talk about the problem
• Not the time to educate and talk at, but to support
and listen
The Search for Meaning and Stages of Grief
• Over time, the diagnosis keeps getting confirmed
• The patient’s task: To reconfigure her schema and
belief system to accommodate the new, devastating
variable
• This leads to anger, bargaining and depression
Anger
• Expressed in different ways (being rude, tearful,
silent, lack of eye contact…)
• Directed at the nearest target
• Often misunderstood by the recipient
Bargaining
• “If I am a better mother and do something different
in my life, I can fix this”
• Expressed by questions about what they can do to
make this better
• Responses should make them feel empowered in
this situation that they have little control over
Depression
• Watch for signs of depression
• Normalize the situation
• Encourage them to seek professional help
How Do We Facilitate the Search for Meaning?
• We do nothing
• Facilitating requires our being, not doing
• Don’t attempt to propel the person into acceptance
• Create a sacred space where the patient can feel
comfortable to express a range of feelings, reactions,
and thoughts and thus move toward acceptance
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Acceptance
• Happens when the person has, in some form,
integrated the new reality (sometimes it doesn’t
happen)
• Give time to get closer to this stage before offering
intense education, consults and plans
• Affirm the patient for getting to this stage
Factors that affect coping
• Maternal age and parity
• Support network
• Family Dynamics
• Culture, spirituality and religion
• Language Barriers
Case Presentation
CASE 1: Congenital Diaphragmatic Hernia
• 27 years old G1
• Referred to Maternal Fetal Medicine Specialist At 20