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‘‘stronger’’ than the baby who expired the previous
year and ‘‘wanted to live.’’At that time, the baby was
transferred to our hospital, a family-centered plan of
care was developed, and consults were requested
from social services, nutrition, genetics, dermatol-
ogy, ophthalmology, ENT, and speech therapy.
Networking with a world-renowned specialist for
ichthyosis provided additional support.
In 2005, adenosine triphosphate-binding cassette
A12 (ABCA12) was found to be the defective gene
associated with HI (Akiyama, 2006) making it pos-
sible for diagnosis by chorionic villus or amniotic
£uid sampling. This provides opportunities to assist
families with decision making and preparation for
the birth of a child with a high probability for mortal-
ity and morbidity. Nine months since her birth, our
baby girl is a growing developing child who receives
ongoing care at our neighboring children’s hospital.
Although the patient’s family is migrant, the mother
is staying in our area year round so she can access
the care her baby needs. Our team has learned
valuable lessons about the importance of a dy-
namic family-centered plan of care that meets the
changing needs of the patient.
Future possibilities include DNA testing from
maternal circulation and even preimplantation di-
agnostic testing. Research has begun to develop
corrective gene therapy for patients with HI (Aki-
yama, 2006).
REFERENCESAkiyama, M. (2006). Pathomechanisms of harlequin ichthyosis and ABCA
transporters in human diseases. Archives in Dermatology, 142(7),
914-918.
Makhopadhyay, S., & Agarwal, R. (2006). Harlequin ichthyosis. Indian
Journal of Pediatrics, 73, 351-352.
No Barriers Exist: Providing Care for the
Fetus With Complex Cardiac Anomalies in
the Most Appropriate Setting
Poster Presentation
The Association of Perioperative Registered
Nurses has reported that the perioperative set-
ting is one of the most potentially hazardous of all
clinical settings. When addressing the obstetric
(OB) patient in the operative setting the OB team
must remember that there is not one patient but
two distinct patients. Typically, a Cesarean delivery
in our Level III unit that involves a healthy mother
with a fetus with known anomalies can be success-
fully performed without a¡ecting neonatal
outcomes. Evenmost fetal structural cardiac
anomalies that are estimated to occur in 8 of 1,000
births can be stabilized in our Level III unit prior to
transfer to a pediatric hospital specializing in cardi-
ac surgery. We have experience in delivering
neonates with known structural cardiac anomalies
who arrive at our hospital from Europe and the Uni-
ted States for follow-up cardiac surgery at our local
pediatric hospital. However, some neonates with
structural cardiac anomalies such as hypoplastic
left heart syndrome (HLHS) and a narrowed ductus
arteriosus will develop life-threatening shock prior
to transfer to a pediatric cardiac center.
Our OB unit was faced with the challenge and re-
sponded to the special needs of a neonate with
HLHS and a narrowed ductus arteriosus. Using a
multidisciplinary approach, a team from obstetrics,
perinatology, and neonatal cardiac surgery made
the decision to deliver the neonate in the most ap-
propriate setting. The most appropriate setting was
a planned Cesarean delivery at a pediatric cardiac
center. Combining the knowledge and expertise of
the OB team and the pediatric cardiac team, the
¢rst coordinated and successful Cesarean delivery
occurred at a local and renowned pediatric cardiac
center. The presentation will also address legal
issues that are of little concern to either health
care provider team but are a valid barrier when pro-
viding health care outside of one’s own health care
institution.
Lisa M. Romano, BSN, RN,
CPN, Pediatric and Adolescent
Maternity, Christiana Care
Health System, Newark, DE
Newborn Care
Dawn Johnson, BSN, RNC,
Labor and Delivery, Christiana
Care Health System, Newark,
DE
Joyce Gregg Swisher, RN,
Labor and Delivery, Christiana
Care Health System, Newark,
DE
Newborn Care
JOGNN 2010; Vol. 39, Supplement 1 S133
Johnson, D, Swisher, J G C A S E S T U D I E S
Proceedings of the 2010 AWHONN Annual Convention