Timing of Information Presented to Parents What Should Be Discussed at the First Session (Box 12.2) Box 12.2 Framework for Crucial Information to Cover at the Initial Consultation Details of the Cardiac Diagnosis Explanation of the anatomy and physiology (in simple terms, using diagrams and models) Handouts to take home Expected Prognosis Prenatal, postnatal, and long-term mortality estimates Risk of progression—likelihood and impact of significant worsening in the condition Quality-of-Life Issues Impact on exercise, behavior, employment, ability to have healthy offspring Likelihood of Extracardiac Abnormalities What can be detected prenatally vs only found postnatally Prenatal testing options—ultrasound, magnetic resonance imaging, genetic testing Risk of genetic abnormality—risks vs benefits of prenatal testing Neurodevelopmental Impact of the Cardiac Defect Especially in the setting of functionally univentricular hearts or genetic abnormalities Potential Causes of the Heart Condition Address any feelings of blame or guilt Discussion of Likely Prenatal Surveillance Frequency of fetal echocardiography, need for relocation to deliver near cardiac surgical center, timing and mode of delivery Management Options Fetal treatment (transplacental drug therapy or fetal cardiac intervention) Termination of pregnancy (is this an option for the couple? Amount of details given subsequently depend on parent response—e.g., how is this done, legal context—required legal length of time for decision) Palliative care—is it an option? What is involved? Active postnatal management (medication, intervention, surgery)— expected type, timing, risks, and outcomes Acknowledge Any Areas of Uncertainty In the diagnosis, management strategy, and anticipated outcome Provide Access to Post-Counseling Resources Written information about the scan result Parent information handouts Support group information Reliable websites for further reading Contact details for further questions/information—e.g., fetal cardiac nurse specialist ▪ A basic, layman's explanation of the diagnosis should be given—including the use of diagrams and heart models ▪ The presence/likelihood of the baby having other problems—including genetic abnormalities, an explanation of whether these can be identified prenatally, and the likely impact of these on outcome Parents should be counseled on the option of prenatal genetic testing, if appropriate ▪ The risk of progression including any risk of fetal loss ▪ The risk of neonatal death ▪ The estimated life expectancy with this condition, if known ▪ The anticipated QOL for people with this form of CHD—how will the diagnosis potentially impact their child's ability to participate in sports, go to school, have children of their own, and to have a job ▪ Acknowledgment that there is a spectrum of disease and outcomes for a given disease Parents should be