Hand of newborn
There are few advances in medicine as remarkable as those in the treatment of extremely premature newborns. Babies born more than three weeks prior to a full-term 40-week pregnancy are considered to be premature; those born before 28 weeks are considered to be extremely premature. Progress in specialty care of extremely premature newborns, many of these babies weighing less than 2 pounds, has led to substantial improvements in both short term an long term outcomes in their lives. The majority of these advances are related to improvement in neonatal intensive care unit (NICU) management. Advancements in ventilator management, and proactive recognition and prevention of heart, brain, and lung issues have meant substantially fewer complications due to prematurity, and substantially improved outcomes in the lives of these children, into adulthood.
In addition to neonatal care, advancements in prenatal studies such as genetic evaluations and radiographic images, including 3-dimensional ultrasonography and magnetic resonance imaging (MRI) has enabled physicians specializing in maternal-fetal medicine (obstetricians who care for high-risk pregnancies) and neonatologisits (pediatricians who specialize in the care of newborns) to better prepare for higher level newborn care, months and weeks prior to delivery.
3D Ultrasound of fetus during week 29 of pregnancy.
This progess in medical management gets blurred when one speaks of palliative care for newborns, where the decision is made to forego invasive medical interventions, letting the newborn pass away in the setting of receiving multiple modalities of comfort care. In some instances, this decision is discussed after birth, either in the days and hours subsequent to delivery, or even months later, when no medical intervention can be instituted to improve the dismal outcome for the child. In other cases, this decision might be discussed during pregnancy, when prenatal testing reveals multiple severe abnormalities that would preclude viability. Usually such devastating anomalies can be discovered early in pregnancy, in the first 12 to 18 weeks, but some may not be found until the third trimester, after 26 weeks of pregnancy. In still other situations, pediatric palliative care may be discussed for older infants and children, where a devastating illness or injury may lead to consideration for end-of-life discussions. While palliative care is typically thought of as an option for end-stage illnesses in adults, palliation for children, and, yes, newborns is a critical part of pediatric medicine.
On September 25, 2020, President Trump signed an Executive Order directing the Department of Health and Human Services (HHS) to ensure that all hospitals provide medical care for all infants and newborns, even those with severe disabilities or prematurity. According to HHS Secretary Alex Azar, “The President’s Executive Order is another step by the most pro-life President in American history and ensures that we provide the same protections for innocent infants who are born premature or with disabilities that we provide for every other American.” In addition, the order highlights that all federally funded hospitals must offer medical interventions for severely premature infants, including those born under 24 weeks gestation, and to offer non-discriminatory access to medical care for newborns with severe disabilities.
Doctor working on a sick baby on a ventilator in a hospital intensive care unit
Many have previously referred to this order as the “Born Alive” order, as it would mandate that any fetus born alive after an abortion must receive emergency medical care to prolong life. Dating back to the Spring 2019, the emphasis on prolonging the life of a newborn with such severe anomalies deemed by physicians to be incompatible with life, has led to massive debates between anti-abortion activists and maternal-fetal-medicine specialists, neonatologists, and pediatric palliative care specialists. While it is extraordinarily rare for a fetus to survive after an abortion, and extremely rare for abortions to take place in the third trimester (after 26 weeks pregnancy), concerns for the notion that physicians are “executing babies,” according to Trump, has muddied these already murky waters: The President has described these events as follows: “The baby is born. The mother meets with the doctor. They take care of the baby. They wrap the baby beautifully. And then the doctor and the mother determine whether or not they will execute the baby.”
Physicians who care for extremely ill newborns and children, and parents who have made the unfathomably difficult decision to terminate a pregnancy in the third trimester or withdraw and/or forego aggressive medical interventions due to extreme anomalies or irreparable injuries such as head injuries leading to brain death, see this executive order quite differently. Some physicians have considered such extreme, painful, painstaking interventions on an individual who is suffering, without viability, as injurious or cruel.
Dr. Judith Brill, Pediatric Anesthesiologist, Professor Emeritus, and former Director of the Pediatric Critical Care Division at Mattel Children’s Hospital UCLA has had over 35 years of experience treating critically ill children both at UCLA as well as worldwide on medical missions: “One of the most difficult moments while caring for a critically ill baby or child is when we come to the realization that none of our sophisticated, technologically advanced and up to date treatments will be able to change or even improve the child's ultimate outcome. Indeed, to add to the feelings of helplessness and futility, we experience moral distress as we continue to help heal the child despite knowing that he or she will not improve or recover, and that our efforts are causing needless pain and suffering. This is the time when providing palliative care is the appropriate direction to take. Palliative care is by no means NO care; the child is not ignored, not left alone to suffer and die.” In fact, quite the opposite takes place. Dr. Brill notes that the infant or child is “given treatment that provides comfort, relieves suffering, alleviates pain, and makes his or her last weeks, days or hours tranquil and peaceful. We don't make any decisions regarding treatment, including palliative or comfort care, without thoughtful, informative and open discussions with the child's parents and loved ones.”
29 week premature infant held by mother while in the NICU
The field of newborn palliative care is relatively new, with recognition of the value of palliation in this population in the 1980’s. Means of promoting thoughtful care for life-limiting conditions diagnosed either prenatally or in the minutes, hours, days, or weeks after birth have allowed for better pain assessment and management, family-centered care, and much needed time for bereavement. The practice of humane, kind, and ethical care is now becoming a critical component of perinatal care of vulnerable newborns with limited life expectancy. According to an article published in 2018 from the University of Missouri-Kansas City School of Medicine, “There remains a need to integrate palliative care with intensive care rather than await its application solely at the terminal phase of a young infant’s life—when s/he is imminently dying. Future considerations for applying neonatal palliative care include its integration into fetal diagnostic management, the developing era of genomic medicine, and expanding research into palliative care models and practices in the NICU.”
