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 they are alive. This wish list may include taking family pictures, receiving visitors, diapering and dressing the baby, or wrapping them 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 their 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.
One thing parents need to understand about the diagnosis is that doctors can only provide an average life expectancy -- and no individual is exactly average. Parents can sometimes be just as distressed if a baby surpasses their life expectancy as they would be if they didn't reach it. This distress is caused in part when parents don't know what to do with their child if they live longer than expected. For this reason, contingency plans should always be in place.
In seeking information, parents may want a second opinion. A second opinion in some cases can be helpful, even if it only confirms the initial diagnosis.
Parents may come across Internet message boards and blogs in their research. These can often provide parents useful advice from others who've had similar experiences, such has how to explain the circumstances to a baby's siblings. However, parents should be wary of what they read. Anecdotes about miracles posted on blogs can sometimes lead to unreasonable expectations and further pain.
Palliative care professionals recommend caution when parents share their situation with others. Parents should consider discussing their situation and plans with family and friends that will be supportive. Discordant opinions from loved ones can sometimes cause pain and guilt.
Know that It's OK to Grieve and That Everyone Grieves Differently
Not all expectant parents feel it's OK to mourn the loss of a child they may never know.
It's usually helpful to grieve and talk about your grief with the other parent. Couples need to understand that each individual grieves differently. Some couples report that their marriages were saved after they understood that their spouses were grieving just as intensely as they were, even though they showed less outward emotion.
Neonatal Palliative Care: Pregnancy
Before birth, health care providers will assist parents in putting all plans in place for the baby's birth, life, and possible death. When a baby is expected to live longer than a couple of days, parents often have the option of taking the baby home. In certain cases, perinatal hospice services can assist in planning the transition home and arrange in-home care with the parents.
Care at this time may focus in part on the psychosocial and spiritual well-being of the parents and siblings. Families will be referred to a social worker or other mental health professional and, if desired, to a hospital chaplain.
Parents are permitted to include relatives, close friends, or clergy in their consultations and decision making. Child life specialists can assist with seeing that siblings' emotional needs are met and that their questions are answered.
Neonatal Palliative Care: Delivery
When a newborn is not expected to live long after birth - be it hours, days, or weeks - the birth plan may include limiting the number of people in the delivery room.
For a normal birth, there may be several health care professionals in the room. For a newborn with a short life expectancy, depending on what life-prolonging measures will be taken, the delivery may be attended only by the doctor. This helps to make the delivery as simple and intimate as possible and maximizes the time parents can spend alone with their child.
Neonatal Palliative Care: Life
Focusing on life, and not entirely on death, is a major objective of neonatal palliative care. In addition to addressing any pain or discomfort the newborn may experience, the palliative care team will do what it can to ensure the newborn's life is a positive experience for the parents and siblings.
The team will help plan for the parents to have the opportunity to parent their baby. This could be through cuddling, breast feeding, diapering, or dressing the baby. Some neonatal ICUs teach parents how to massage their newborn to ease pain or discomfort.
Parents and siblings will also have opportunities to make memories with the newborn. The baby's handprints and footprints can oftentimes be made. Locks of hair can be saved. Pictures and videos can be made by professionals trained to photograph newborns in the ICU. Arrangements can sometimes be made to take the baby outdoors or to a peaceful non-medical environment. Religious ceremonies can be carried out by hospital chaplains or clergy brought in by the family.
If the family wishes to take their baby home, the goal of care will be to facilitate the baby's transition home as soon as possible.
Neonatal Palliative Care: Grief and Bereavement
Bereavement support should begin as soon as a baby is diagnosed with a life-threatening condition and will continue after the family has been discharged from the hospital and after a baby has passed away. Among measures palliative caregivers take to support the family in their grief are:
- Connecting family with social workers, chaplains, grief counselors, and support groups
- Educating family about the grief process
- Connecting family with parents who've experienced a similar loss
- Attending memorial services
- Staying in touch with the family through cards and phone calls
- Hosting annual memorials at the hospital
Many parents report finding great comfort in support groups and in continued contact with the hospital and staff.
There may be no greater loss than the loss of a child. Neonatal palliative caregivers help parents make the most of their child's life and support them through their grief.