aware of the best- and worst-case scenarios for the type of fetal CHD ▪ Whether there is likely to be an impact on neurodevelopment and its potential severity ▪ The relationship between severity of CHD and intellectual functioning, with a higher proportion of children with severe CHD having low-normal IQ compared with those with mild-moderate CHD.47 Some parents may overestimate the impact and believe that the child will be severely intellectually disabled; however, Brosig et al found that CHD patients without genetic comorbidities exhibited cognitive abilities within the normal range.48 ▪ The potential for feeding difficulties, trouble with infant weight gain, and delays in developmental milestones such as crawling, walking, and speech, as well as early intervention services to mitigate these delays ▪ A description of their options Where appropriate, present options of termination of pregnancy, palliative care, and surgical/medical/interventional treatment In the rare cases where intrauterine treatment is available (e.g., balloon aortic valvuloplasty for critical aortic stenosis or, more commonly, maternal medical therapy to treat fetal arrhythmia), the parents will require an understanding of what this would involve, anticipated outcomes, and the risks of the treatment (to both the mother and fetus) ▪ A description of what to expect if the pregnancy is ongoing How many more visits to the fetal cardiology clinic, what would be the anticipated type of delivery, where would the delivery take place, would the baby be delivered prematurely (in the majority of cases, a vaginal delivery close to term is preferred) ▪ If they are considering pregnancy termination, information on the legal situation regarding when a decision would have to be made and, if they choose this option, ensuring they understand what the procedure entails It is vital that the parents do not feel rushed into making a decision and they take time to process the information and discuss their options between each other and anyone else they choose to involve ▪ Acknowledgment that every baby is different—the fetal counselors give a basic blueprint for common anticipated outcomes; however, the child's actual outcome will depend on many genetic and environmental factors Patients often are too overwhelmed to ask many questions at the initial counseling session Common themes tend to emerge that parents would like information on, so counselors should anticipate what they may wish to know Acknowledge that parents often feel guilty or to blame in some way; address whether the cause of the fetal CHD is known or could have been avoided Families are often afraid to ask questions such as could the diagnosis be wrong and what are the chances of the heart defect improving on its own They are often worried about whether their other or future children could have an undiagnosed heart problem It is generally a good idea to address whether a heart transplant is an option or may be required during the child's lifespan Action Points After the First Appointment ▪ Parents require information about how to make contact with the team to ask questions as they arise It is highly likely that parents will think of more questions to ask the care team as they process the information they received at the initial counseling session A fetal cardiac nurse coordinator/navigator is a very helpful resource for families to contact In addition, a follow-up phone call or home visit from the nurse coordinator/navigator in the days after the initial consultation may be extremely helpful—this would provide an opportunity to revisit the information given in the initial counseling session and to answer questions that have arisen ▪ Parents often consult the Internet for information, including social media and blogs It is important to remind families that the Internet is unregulated and that at times unreliable information will be encountered It is helpful to supply a list of reliable websites to consult (see Box 12.1) ▪ It may also be appropriate to offer an opportunity to meet with another family who have been through a ... ▪ A description of what to expect if the pregnancy is ongoing How many more visits to the fetal cardiology clinic, what would be the anticipated type of delivery, where would the delivery take place,