Birth defects are structural or functional anomalies (for example, metabolic disorders) that occur during intrauterine life and can be identified during pregnancy or at birth, or sometimes may only be detected later. Birth defects may be caused by one or more genetic, infectious, nutritional, or environmental factors. Birth defects are important causes of newborn and childhood deaths, chronic illness, and disability.
The first-ever World Birth Defects Day was observed in 2015 on 3 March with the support of 12 organizations. Many global and national organisations have joined in support to prepare for #WBDDAY every year.
This year, the World Health Organization (WHO) is highlighting the urgent need for countries to raise awareness about birth defects and strengthen health systems’ response to the specific health, development, and psychosocial needs of this population. This is coupled with the need for actions to prevent, detect, and manage these congenital anomalies.
No two people suffer from these diseases in the same way, not only because of the disease itself (which in each case is different) but also because of the contexts and environments in which they develop.
World Birth Defects Day, marked annually on 03 March, aims to raise awareness about prevention programmes and improving the quality of services and care received by people with congenital anomalies, disorders, or conditions.
Perinatal palliative care emerged as an essential measure to comprehensively address the treatment of neonatal patients with prenatal or perinatal diagnoses of severe life-threatening illnesses. This care is aimed at newborns suffering from conditions that prevent them from surviving beyond a few minutes or hours, or in cases where they are born lifeless. The focus is not only on the neonatal patient, but also on supporting the mother and close relatives. The primary goal is to preserve the dignity of newborns and to provide them with the greatest possible comfort during their transition to the end of life.
Paediatric palliative care prevents, identifies, and treats suffering in children with chronic, progressive, or advanced diseases and supports their families throughout the disease process. According to the Pan American Health Organization, 8 million newborns each year have some serious congenital defect, and approximately 40% will die before the age of five.
On the other hand, the WHO estimates that 240,000 newborns per year present congenital disorders that will cause their death in the first 28 days of life. In addition, nine out of every ten children born with severe congenital disorders live in low- and middle-income countries.
Although cases of end-of-life diagnosis should be comprehensive for the whole family, in perinatal patients’ special attention should be given because of the vulnerability of this period of development, family, and patient. Perinatal and postnatal (intrapartum and postpartum) palliative care is a watershed in the quality of life that can be provided to newborn patients who are dying and to mothers and families who are grieving the loss of a newborn.
Let us remember that parents are at the same time caregivers and legal agents of guardianship and decision making in favour of the newborn, which generates complex situations within the same family. It is also convenient to have spiritual support that facilitates reaching agreements for the best welfare of the child.