Learning About Palliative Care for Newborns

What is palliative care?

Palliative (say "PAL-ee-uh-tiv") care is a kind of care for people who have a serious illness. Your baby may get this type of care in the neonatal intensive care unit (NICU). Palliative care focuses on improving your baby's quality of life. It also provides support for you and your family.

Palliative care may include medicine to reduce pain or other symptoms. But this type of care is different from treatment to cure an illness. Your baby can get care to treat an illness and get palliative care at the same time. You don't have to choose one or the other.

Many different staff members may be involved in palliative care. Your baby's care team may include doctors, nurses, social workers, and spiritual advisers.

You are a big part of the care team too. Your baby needs you. Your presence, your touch, and your voice are all important to your baby.

How can palliative care help your family?

Having a baby who is seriously ill may make you feel sad, scared, or alone. Your baby's palliative care providers will help you in any way they can through this tough time.

• They will help you understand your baby's condition. Then you can better decide what treatments you want or don't want for your baby.
• They will help you learn what you can do to care for your baby in the hospital.
• They can help you make future plans for your baby's health and medical care.
• They will ask questions about how your baby's illness is affecting your emotions and your family.
• They will provide or help you find emotional and spiritual support for you and your family.

What can you expect?

• Your baby will be kept comfortable and warm.
• You may see tubes and wires attached to your baby. This can look scary. But these things help the staff take care of your baby. The tubes may supply oxygen, fluid, or medicine to your baby. The wires are attached to machines that keep track of your baby's pulse rate and other vital signs.
• If your baby has trouble breathing, the doctor may use a ventilator. This machine helps your baby breathe. To do this, the doctor puts a soft tube through your baby's mouth into the windpipe.
• It's hard to be apart from your baby, especially when you worry about your baby's condition. Know that the hospital staff is well prepared to care for babies receiving palliative care. They will do everything they can to help. If you need it, ask for support from friends and family. You can also ask the hospital staff about counseling and support.