Continuing the
Pregnancy
Preparing and caring for families facing
a lethal prenatal diagnosis
Bill Campbell
Licensed Genetic Counselor
Santa Clara Valley Medical Center
Bill.Campbell@hhs.sccgov.org
Lethal diagnoses of genetic conditions
established during the last year at VMC*
• 5 cases of prenatally known lethal diagnoses
• 4 of these families continued the pregnancy
• 1 child with trisomy 18 is still alive at 11 months
of age
• *= EDD between 10/31/11 and 10/31/12
Common experiences of families
with a prenatal lethal diagnosis1
Fragmented health
care
Perceived lack of
concern for the baby
1. "My baby is a person": parents' experiences with life-threatening fetal diagnosis.
Côté-Arsenault D, Denney-Koelsch E.J Palliat Med. 2011 Dec;14(12):1302-8. Epub 2011 Nov 11.
Fragmented Health Care
“I lost contact with my regular health care
provider, so we got shuttled into a little
subsystem. It’s like, ‘Something’s wrong, so you
don’t go to us anymore, you go to these new
people.’” – Mother of fetus diagnosed with
trisomy 18
Lack of continuity of care, in one study, was tightly
correlated with patient satisfaction (P<.004)2
2 The
health-care experiences of families given the prenatal diagnosis of trisomy
18.Walker LV, Miller VJ, Dalton VK. J Perinatol. 2008 Jan;28(1):12-9. Epub 2007 Oct 25
A case study in the difficulties of
communicating between teams
Prenatal
diagnosis of
multicystic
dysplastic kidneys
Intubation and
prolonged CPR
upon delivery
Sharing Information Amongst
Providers: VMC approach
Providing a
brief
summary of
important
cases
Discuss
complicated
cases in
multidisciplinary
conferences
Introduce
patients to
Neonatology
team
Delivering the news to parents
• Deliver news in a clear and sensitive way,
without time pressure
3.
•
Provide all the options to the parents
•
Assess parental supports, including cultural and
religious supports3
The decision to continue: the experiences and needs of parents who receive a
prenatal diagnosis of holoprosencephaly Redlinger-Grosse K, Bernhardt BA, Berg K,
Muenke M, Biesecker BB.. Am J Med Genet. 2002 Nov 1;112(4):369-78
Affirming parenthood
“Treat us normally. This is our baby
and we want to enjoy the pregnancy
and our time with her. Don’t act as if
she isn’t there. ”
“It’s a person; it’s important to have a
name. He’s part of our family” 4
4 . "My
baby is a person": parents' experiences with life-threatening
fetal diagnosis. Côté-Arsenault D, Denney-Koelsch E. J Palliat Med.
2011 Dec;14(12):1302-8. Epub 2011 Nov 11
Creating memories after birth
•
•
•
5
When perinatal loss is experienced,
time to create a bond between baby
and the family is often brief.
Mementos of the lost family member
are often the only tangible image that
young siblings have.
“Anything tangible you can get your
hands on is so important. The one
thing you want is already gone, and...
you’ve got to have that piece of
something for comfort”5
5Affirming
motherhood: validation and invalidation in women's
perinatal hospice narratives. Lathrop A, Vandaveuse L. Birth.
2011 Sep;38(3):256-65. doi: 10.1111/j.1523536X.2011.00478.x. Epub 2011 May 20.
VMC’s plans for improving care
• MICC, L & D, and NICU each have perinatal
bereavement policies in place.
• However, many critical staff have no formal
training in bereavement care.
• In September 2012, six staff members were
trained to train other staff in bereavement care.
• We hope to improve training throughout the
hospital.
A Success Story
Diagnosis of Severe IUGR and
Dandy-Walker Malformation
Coordinated counseling and care
provided
Compassionate care provided by
NICU staff
Mental Health Care Coordinated
for Parents
Contact Info
Bill Campbell
Licensed Genetic Counselor
Santa Clara Valley Medical Center
Bill.Campbell@hhs.sccgov.org
(408) 885-3041