Regional Prenatal Congenital Heart Disease Detection and Practices Lori Erickson MSN, RN, CPNP-PC Ward Family Heart Center The Children's Mercy Hospital, 2014. 05/14
Objectives Evaluate our regional prenatal detection of congenital heart disease Discussion of current local and regional detection of CHD admitted to CMH Discuss statistics of Fetal echo and Integrated consultations completed Discuss Multi-disciplinary process in prenatal detection and Counseling 2
Background 1-3 /100 babies are born with a heart defect 6/1000 with Moderate Severe categories of CHD 2.4/1000 Live births require invasive procedure during the first year 3 (Hoffman and Kaplan 2002)
Background In 1994, only 12.7% of CHD detected prenatally In 2009, 34% of all hospital stays were related to cardiac defects 4 (AHA, 2013; Hoffman and Kaplan 2002 )
Goals of Fetal Cardiology Accurate Fetal Diagnosis and Plan of Care Timing and Indication for Referral Components of a Fetal Echocardiogram Including cardiac anatomy, function, and rhythm Complementary evaluation such as MFM US, MRI, and Electrophysiology evaluation Anticipatory Counseling for Family and Care providers about postnatal care 5 (Donofrio et al 2014)
Goals of Fetal Cardiology Normal NOT Normal 6
Categories of Congenital Heart Disease (CHD) Severe/Major CHD Require surgery in first 30 days of life Intensive Care and specialty consultation required Examples: D-TGA, Tricuspid and Pulmonary Atresia, Hypoplastic Left Heart Syndrome (HLHS), Single Ventricle Anatomy, Double Outlet Right Ventricle (DORV), Truncus arteriosus, TAPVR, Critical Pulmonary stenosis, Aortic arch abnormalities (COA, IAA, Hypoplastic aortic arch) 7
National Prenatal Detection 8 (Donofrio 2014; Levy et al 2013)
National Prenatal Detection 9
Standardized Fetal Echo Screening Implemented an educational program for sonographers including 4 chamber view and both outflow tracts in low-risk patients/pregnancy Video Clips of prenatal ultrasounds Rotating the sonographers with the Pediatric Cardiologists 10 (Donofrio 2014; Levy et al (2013)
Positives of Prenatal Cardiac Diagnosis Improved Morbidity with less intubation, acidosis, or cardiovascular collapse less likely related to ductal closure Improved Neurocognitive outcomes in children with d-tga Improved surgical outcome with HLHS and coarctations (Calderon et al, 2012, Franklin et al, 2002 & Tworetzky et al, 2001 ) (Calderon et al, 2012, 11 Franklin et al, 2002 & Tworetzky et al, 2001) )
Positives of Prenatal Cardiac Diagnosis NPCQIC Cohort of HLHS patients 75% prenatal detection Prenatal detection group had more stable pre-op course Less post-op ventilation P=0.002 (9 vs 12 days) 12 (Brown et al, 2014)
Positives of Prenatal Cardiac Diagnosis Birth at closer proximity to the tertiary center (<10 minutes) benefitted neonates with HLHS If born >90 minutes away, chance of survival is significantly decreased 13 (Morris et al 2014)
Positives of Prenatal Diagnosis Parental and Family counseling about cardiac diagnosis with multi-disciplinary team Short and Long-term prognosis Surgical planning Plan of Care Co-Morbid Conditions Social and Family Factors of CHD 14 (Feinstein et al., 2012)
Parental Stress 1 month after diagnosis parents can report acute grief patterns and high anxiety Need individual and group support from providers 15 (Fonesca 2011)
Local Detection of Congenital Heart Disease 16
Process of Fetal Cardiology Abnormal OB Screening Ultrasound MFM/ Perinatal Fetal Cardiology 17
Reasons for Referral Concern for CHD Maternal Risk Factors Fetal Risk Factors Arrhythmia Genetic Abnormality Familial History of CHD 18
Number of Echos Fetal Echocardiogram at CMH 350 300 250 200 150 100 50 Fetal Echo Frequency 2009-August 2014 0 2009 2010 2011 2012 2013 2014 f/u 9 3 7 44 123 113 New 59 59 106 115 177 189 19 August 2014
Percent Prenatlly Detected CMH Prenatal Detection for Major Congenital Heart Disease January 2010 to July 2014 60 50 40 30 20 10 0 2010 2011 2012 2013 2014 Prenatal Diagnosis 28.1 44.9 47 51.5 52.2 20
CMH Prenatal Detection By Diagnosis 100.0% 90.0% 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% 0.0% 2010 2011 2012 2013 2014 21 HLHS (Stage I) Left Sided Lesion (No VSD) VSD with Other Lesions (Truncus, IAA, COA) ASO ASO + VSD BT shunt for Pulmonary Blood Flow TAPVR
Fetal Cardiac Clinic Staff: 5 Pediatric Cardiologists 1 APRN 2 RN coordinators 1 Fetal Cardiac Ultrasonographer 22
Multidisciplinary Teams Cardiology Child Life/Chaplains MFM/OB Social Work/PACT Neonatology Genetics CV surgery 23
Integrated Consultation Family able to meet with multiple disciplines to review plan of care 2012: 169 2013: 246 2014: 177 to date Neonatology, Cardiac Surgery, Heart Center APRN/RN s, Electrophysiology, Cardiac Interventionalists, Cardiac Anesthesia Genetics and SW 24
Fetal Cardiac Clinic Vision Access to Services Support for Families Communication between Providers Academic Enhancement Community Awareness 25
References American Heart Association (2013). Heart Disease and Stroke Statistics- 2013 Update. Circulation, e153. Brown D.W. (2014, August). Impact of prenatal diagnosis in survivors of initial palliation of single ventricle heart disease: Analysis of the national pediatric Cardiology quality improvement collaborative Database. Pediatric Cardiology (Epub ahead of print) Calderon, J., Angeard, N., Moutier, S., Plumet, M., Jambaque, I., & Bonnet, D. (2012). Impact of Prenatal diagnosis on Neurocognitive outcomes in Children with Transposition of the Great Arteries. The Journal of Pediatrics, 161:94-8. Donofrio, M.T. et al (2014). Diagnosis and Treatment of Fetal Cardiac Disease: A Scientific statement from the American Heart Association. Circulation, 129: 2183-2242. Fonseca, A., Nazare, B, & Canavarro, M.C. (2011), Patterns of parental Emotional reactions after a pre-or postnatal diagnosis of a congenital anomaly. Volum 29, issue 4. Journal of Reproductive and Infant Psychology Franklin, O., Burch, M., Manning, N., Sleeman, K., Gould, S., & Archer, N. (2002). Prenatal diagnosis of coarctation improves survival and reduces morbidity. Heart, 87:67-69. Hoffman, J. E. & Kaplan, S. (2002). The Incidence of Congenital Heart Disease. Journal of the American College of Cardiology, 39:1890-900. Levy, D.J., Pretorius, D.Rothman, A., Gonzales, Marcos, Rao, C., Nunes, M.E., Bendelstein, J., Mehalek, K., Thomas, A., Nehlsen, C., Her, J, Burchette, R.J., Sklansky, M.S. (2013). Improved Prenatal Detection of Congenital Heart Disease in an Integrated Health Care System, Pediatric Cardiology, 34:670-679. Morris, SA, Ethen, MK., Penny, DJ et al. (2014). Prenatal Diagnosis, birth location, surgical center, and neonatal mortality in infants with hypoplastic left heart syndrome. Circulation. Tworetzky, W., McElhinney, D.B., Reddy, V.M., Brook, M.M., Hanley, F.L., and Silverman, N.H. (2001). Improved surgical outcome after fetal diagnosis of hypoplastic left heart syndrome. Circulation, 103:1269-1273. 26