Talk to the mother and father-to-be

  As a senior pediatric cardiologist, I have had a lot of experience in close contact with mothers and fathers-to-be who have fetal heart disease or/and signs of fetal abnormalities, so I would love to talk to you in a heart-to-heart, friend-like way. I don’t want to talk too much about academics here, that’s a doctor-patient interaction, it’s work.  I was one of the earliest doctors in China to come into contact with fetal heart disease diagnosis. In 1989, when I was studying in the Department of Pediatric Cardiology at the Children’s Hospital of the University of Pittsburgh School of Medicine, I often went with a pediatric cardiologist from the Children’s Hospital to the Maternity Hospital affiliated with the School of Medicine to perform fetal heart ultrasound on mothers with fetuses with congenital heart disease, and to diagnose, follow up, and develop treatment plans after delivery. At that time, fetal heart disease caught my attention, and I was impressed by the follow-up of a fetus with severe aortic stenosis, in order to monitor it more closely after delivery, and to provide timely aortic valve balloon dilatation in case of cardiogenic shock, so that it could safely pass the dangerous period, improve the quality of life, and lay the groundwork for future surgery. Their main goal in performing fetal cardiac ultrasound is to reduce early neonatal mortality in complex congenital heart disease, improve the outcome of the procedure, improve the quality of survival of the children, and prolong their lives as much as possible.  What impressed me more was the research and development of interventional and surgical treatment of fetal heart disease in Western countries, where their aim is to address the more serious consequences that some serious cardiovascular malformations may lead to as they grow and develop with the fetus, affecting the long-term outcome of the child. For example, aortic stenosis may trigger left heart dysplasia, i.e., a small left ventricle with a thin aorta, with a very high postnatal mortality rate, 90% within one week of birth if not treated aggressively; death. If good medical treatment is available, three surgeries are required, and eventually the surgery results in only a single ventricular circulation for life, both lacking a right ventricle and a direct return of venous blood throughout the body to the pulmonary artery without going through the right ventricle. For this reason, they conducted a study on fetal cardiac catheter intervention with aortic valve balloon dilatation and implemented it clinically, and several cases of fetal cardiac catheter intervention have been done in collaboration with a team of pediatric cardiologists, obstetricians, and ultrasonographers at Boston Children’s Hospital.  At that time, I was impressed by the depth of medical humanism in the United States, their respect and protection of every life is beyond our reach, and even beyond the understanding of some people. Of course, this has to do with the fact that more than 85% of them are devout religious believers, who believe that a life begins with a fertilized egg, which is given to them by God and cannot be abandoned at will, and that they have the right to live, and as parents and society should take responsibility for them. Even if they are disabled, there, they receive more care from their families and society. There, there is zero tolerance for discrimination against diseases.  In recent years, based on our national policy of eugenic family planning, and also to minimize the under-five mortality rate, in line with international standards. In order to reduce the burden on families and society, the country has also carried out enhanced prenatal diagnostic screening for diseases with major disabilities and appropriate termination of pregnancy to reduce the birth rate of severe malformations, based on years of research and studies. Over the past decades, thanks to the continuous efforts of the government and pediatric medical workers, the under-five mortality rate has been decreasing and is getting closer to the world’s advanced level. In particular, the fetal teratology screening, including fetal chromosomal abnormalities and the screening of serious structural abnormalities of various systems, which has been carried out in the last decade or so, has kept up with the advanced international level technology and achieved great success. In the United Kingdom, the average correct diagnosis rate of fetal echocardiography can reach 85%, and some large specialized hospitals in China have exceeded this level and can reach 95%. In Beijing, for example, 222 patients with trisomy 21 (congenital stupidity, Down’s syndrome) were diagnosed in 2011, and 157 pregnancies were diagnosed and terminated during fetal life (70.7%;), but 65 children with Down’s syndrome were still born. in the three years from 2009 to 2011, the percentage of babies born with congenital heart disease was 7.31‰, 6.27‰, and 4.58‰, respectively. From these two sets of figures, we can draw two conclusions: 1. screening for fetal abnormalities can indeed reduce major disabilities or lifelong disabling conditions; 2. no test can guarantee that 100% of all children born are free of malformations, even for severe disabilities, not to mention the countless malformations and disabilities that exist in human beings. This situation, on the one hand, motivates researchers to develop more advanced methods, medical staff to demand more skills and train more human resources. On the other hand, it also shows the world a fact that must be acknowledged: even the most accurate methods cannot detect all the results of natural forces, and “man cannot prevail”. Our mothers and fathers-to-be would like their doctors to ensure that their children are completely healthy, however, after all, our medical science and medical technology are not yet at that high level. We all want our children to be elite, but imagine what kind of a world it would be if all that came out were elite? After all, the underdogs in society are the driving force behind philanthropy and the promotion of the good side of humanity.  With that said, it seems like the chat is almost over. The following words are in no way an excuse for the medical staff, the team of doctors should have “self-discipline” and “self-improvement”, constantly improve the quality of our medical care, and try to meet the requirements of our clients. But what happens when a fetal problem is detected? Some parents-to-be are so distressed that mothers-to-be even cry in pain, have trouble sleeping, and are at a loss for words. Some speculate which side’s genes are wrong and which side is responsible, some self-condemnation and regret that they did not prepare properly when they were pregnant, some blame the doctor why they did not check it out earlier, and so on. Here, I would like to advise expectant mothers and fathers from the bottom of my heart that when you wish to become a mother and father, you should not only think about the joy of family, but also be fully prepared to take on the responsibility of parenthood. Medical technology has advanced to the point where the prenatal detection rate of complex malformations and severe disabilities has increased significantly, giving parents-to-be more options. However, if the odds of one in a thousand or even one in ten thousand unfortunately catch up with you and fate gives you a child with a disability, you should be brave enough to take responsibility and be sensible enough to accept it. This is not the child’s fault, not the parents’ fault, nor the medical staff’s fault, this is the inevitable existence of the laws of nature, but more responsibility falls on your body, since fate so arranged, gladly accept the mind will be more peaceful, life will also be good. If the medical personnel think that the society and parents do not understand the difficulties of their work and the limitations of the diagnostic method, and they do not actively carry out fetal teratology screening, what then? The main purpose of fetal screening is not to end life, but to make life with disabilities more prepared to come into the world and enjoy the beauty of life together with us.  These are only some of my personal experiences, my level is limited, there may be mistakes, I hope to communicate with my friends, and my clients, I hope to have some enlightenment to the parents-to-be, hope you enjoy the whole process of pregnancy.