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Andersons pediatric cardiology 277

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similar diagnosis, in order to share their experiences and provide support, although physicians may prefer to wait until a couple has decided to continue with the pregnancy before doing this Information on support groups may also be appropriate ▪ Make referrals for additional testing (e.g., obstetric ultrasound, amniocentesis, fetal magnetic resonance imaging), counseling, and support—including genetics, perinatology, palliative care, social work, and psychology as appropriate ▪ It is crucial that information regarding the fetal CHD diagnosis and the content of the counseling are available to the woman's care team, including her family doctor, obstetrician, and midwives We have found it very useful to supply the woman with a copy of her scan report, so this information can be shared if it cannot be readily accessed by her care team What Should Be Discussed at Follow-Up Appointments? If pregnancy termination is chosen, it is important to offer follow-up counseling with grief counselors, provide details of support groups, ensure that the family doctor is aware of this outcome, discuss the importance of an autopsy, and to provide follow-up counseling with the fetal cardiologist During the follow-up session, any outstanding questions can be answered, autopsy results discussed, counseling can be given regarding the risk of recurrence in future pregnancies, and the offer of early fetal echocardiography for future pregnancies can be made For ongoing pregnancies, the focus tends to switch toward planning for delivery and the details of likely postnatal management strategies It remains important to go back through details discussed in the first counseling session, as repetition will aid their understanding Practical arrangements should be addressed, including whether the mother will need to relocate for the delivery, the anticipated delivery type, and location Parents require information about what will happen immediately after the delivery—whether they will be able to hold the baby, whether the baby will require any emergency procedures, where the baby will go to after the delivery room, if/when the mother will be able to breastfeed, when the first postnatal echo will be done to confirm the diagnosis, what extra information will be obtained by that echo, what other tests will be required, and who will do any operations/procedures required Parents often require help with understanding the likely impact on their finances and childcare They require estimates for how long they can expect to be away from home or off work It is important to try, where possible, to make plans that minimize separation between mother and baby after delivery, as this is a crucial time for establishing bonding, which if interrupted can have a longterm detrimental impact on maternal behaviors.49 Mothers who are unable to breastfeed may be concerned about the impact on bonding and be encouraged to bond in other ways Parents are often worried about what tubes and lines their child will have and appreciate a tour of the neonatal unit, pediatric ward, or intensive care unit where their baby will go after delivery They also need information regarding accommodations for them and their other children when their baby is in the hospital and details of visiting policies The fetal cardiology team must put in place arrangements for optimizing the outcome for the baby and ensure that the appropriate teams are aware of the plans for delivery and management strategies Social workers, psychologists, and the nurse coordinator are key individuals in preparing the parents for life with an affected baby The parents may also wish for advice on how to tell their other children that they are going to have a baby with CHD and what strategies they can adopt to minimize the disruption of family life Later in the pregnancy, within weeks of the delivery a multidisciplinary care meeting with the family may be helpful Such a meeting would allow parents to ask questions about the delivery and immediate postnatal care including expected nature and timing of intervention and be better prepared for the birth of their child Members of this team may include the obstetrician or maternal-fetal medicine specialist, neonatologist, cardiologist, obstetric and/or neonatal nurse specialists from obstetric, neonatal services or both, and social workers Additional specialists (e.g., general surgeon, otolaryngology specialist) may be necessary if there are more complex extracardiac pathologies An initial team meeting just prior to entry of the family may be necessary to be certain the team is on the same page regarding delivery and management plans especially for more complex patients and those requiring emergent or urgent intervention after delivery If the family is from out of the region, involving their primary obstetric clinician and/or counseling fetal cardiologist through telehealth, may provide some comfort to the parents and keep the outside providers involved in the planning This provides better continuity of care for parents and their infant ... Parents are often worried about what tubes and lines their child will have and appreciate a tour of the neonatal unit, pediatric ward, or intensive care unit where their baby will go after delivery They also need information regarding accommodations for them and their other children when... information regarding accommodations for them and their other children when their baby is in the hospital and details of visiting policies The fetal cardiology team must put in place arrangements for optimizing the outcome for the baby and ensure that the appropriate teams are aware of the

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