Neonatal Palliative Care: Focus on Life
When a fetus or newborn is diagnosed with a life-threatening condition, no matter how early or late in the pregnancy, it is a loss that parents grieve.
Parents imagine their child's future from the moment they find out they're expecting. By a first prenatal doctor visit, parents may have countless plans for their baby. Now different plans must be made. For this reason, palliative care may be recommended before, during, and after delivery.
Palliative care is recommended for newborns who:
- Are born at extremely low birth weight (i.e. a pound or less)
- Are born before 23 weeks of gestation
- Are born with a lethal abnormality or malformation
- Will experience more burden than benefit from further treatments for their condition
Palliative care can begin as soon as a diagnosis is made, even if it's during pregnancy. If a baby or fetus has a life-threatening condition, doctors usually will offer parents a set of options. Palliative care providers help parents make and cope with these decisions.
Know What You're Feeling Is Normal
Getting a diagnosis of a baby's life-threatening condition may be the worst news of a parent's life. When an abnormality is diagnosed prenatally, parents can expect to feel a number of normal emotions. Some of the most typical reactions include:
- Disbelief of the diagnosis
- Guilt for the possibility of having done something that may have caused this
- Thoughts of not carrying a pregnancy to term and associated guilt
- Fear of never being able to have a healthy child
Make Detailed Plans
Palliative care providers will assist parents in making detailed plans for the delivery and for the baby's life, even if the baby has a limited amount of time to live.
Birth plans include who will be present in the delivery room; what resuscitation or life-prolonging efforts, if any, will be made; what religious ceremonies, such as baptism, will take place; and whether the baby will be breastfed and held. Parents may be asked what they plan to name the baby.
Decisions will also include what the parents would like to do with the baby while he or she is alive. This wish list may include taking family pictures, receiving visitors, diapering and dressing the baby, or wrapping him in a family blanket passed down through generations. Some parents express the desire to just have some time alone with their baby. The palliative care team will do what is needed to honor the parents' wishes.
Doctors recommend that before the birth, couples discuss not just the baby's life-threatening illness but his life as well. Parents have said that making plans helped them feel in control of their situation.
Parents should learn everything they can about their baby's condition. At the initial diagnosis, parents will be shocked and likely not absorb information beyond a poor prognosis. Parents can empower themselves with as much information as they can find about the diagnosis after they've had time to process the news.