Distress of parents of fetuses with congenital heart disease

  At present, there are still many parents and even obstetricians and pediatricians who believe that congenital heart disease is an incurable disease and that even if surgery is performed, there will be sequelae and the body will not get better in the future. Often these misconceptions lead to a large number of fetuses with simple, curable congenital heart disease being killed in the womb.  How to decide whether to keep a fetus with congenital heart disease?  The “one-stop-shop” model of prenatal diagnosis → postnatal diagnosis → postnatal pediatric medical and surgical cardiac treatment has been internationally recognized as the best treatment model for congenital cardiovascular anomalies. The cardiologist informs the pregnant woman and her family in detail about her condition and prognosis; the prenatal diagnosis center doctor introduces the necessity, advantages and limitations of prenatal diagnosis; the genetic related test results are analyzed; the obstetrician advises the mode, time and place of delivery according to the pregnant woman’s own and fetal factors. The three parties will combine the family situation of the pregnant woman and give the most optimal plan, and the pregnant woman and her family will make the final decision.  For different congenital heart disease characteristics, surgical techniques, perioperative treatment and long-term prognosis, cardiologists will give the following four recommendations.  Termination of pregnancy is strongly recommended: mainly for diseases for which no treatment is available or the treatment effect is very poor at this stage.  1. There are abnormalities in genetic-related tests and clearly untreatable lesions, such as chromosomal diseases and genetic mutations of clear significance, etc. 2. surgery, huge cost, and uncertain long-term prognosis.  Severe arrhythmias that affect the quality of long-term survival, such as congenital III° AV block. 2. Pre-existing heart disease in which anatomic correction cannot be performed to restore biventricular circulation. 3. Hypoplastic left heart syndrome. 4. Severe valvular disease. 5. The disease that costs a lot of money.  Complete transposition of the great arteries 2. right ventricular double outlet 3. pulmonary atresia with good pulmonary vascular development 4. tetralogy of Fallot with poor pulmonary vascular development 5. complete pulmonary venous ectopic drainage 6. aortic constriction 7. complete atrial septal defect 4. strongly recommended preservation: mainly for diseases with definite treatment methods, low cost and good long-term prognosis.  1. Precardiac diseases with low surgical risk and operable cure: such as ventricular septal defect, large atrial septal defect, single atrium, well-developed pulmonary vascular tetralogy of Fallot, pulmonary valve stenosis 2. Non-malignant arrhythmias: such as frequent supraventricular premature beats 3. Variant structures with normal function: such as permanent left superior vena cava, right-position aortic arch Conclusion For families who choose to keep their fetuses, they must do a good job of follow-up. For fetuses with complex precardiac disease, it is recommended that they be born in hospitals with experience in medical and surgical treatment of precardiac disease, or be referred to the above-mentioned hospitals quickly after birth, so that the fetus can receive timely and necessary treatment after birth. For fetuses with simple precocious heart disease, a follow-up schedule and the timing of initial surgery are given, and regular follow-ups are made at our “Precocious Heart Disease Clinic”. With the development of prenatal diagnosis, more and more cases of fetal cardiovascular system abnormalities have been detected in recent years. In the past three years, the number of cases of congenital cardiovascular anomalies in our hospital has been increasing year by year, and now we are receiving more and more referrals from outside hospitals, which shows that people are paying more attention to this problem, which also means that more and more fetuses will be treated effectively, which also reflects the progress of social and humanistic concepts. Standardized prenatal diagnosis can improve the prenatal detection rate and accuracy of fetal precocious heart disease; the development of rational and scientific intervention strategies can reduce the number of births with severe and complicated precocious heart disease, improve the quality of the population and reduce the burden on society; accurate prenatal diagnosis and the involvement of cardiac specialists can advance the diagnosis and rescue time of severe precocious heart disease, improve the efficacy and reduce neonatal mortality.