When a baby dies in the first 28 days of life, it is called neonatal death. In the United States in 2006, about 19,000 babies died in their first month (1).
As parents attempt to cope with a loss, they may have many questions about what happened to their baby. The following may help parents discuss the loss of their baby with their health care providers.
Premature birth (before 37 completed weeks of pregnancy) is the most common cause of neonatal death. Prematurity and its complications cause about 25 percent of neonatal deaths (2). The later a baby is born, the more likely he is to survive. Almost 30 percent of babies born at 23 weeks of pregnancy survive, while about 50 to 60 percent of babies born at 24 weeks, about 75 percent born at 25 weeks, and more than 90 percent born at 27 to 28 weeks, survive (3,4,5).
More than 12 percent of babies born in the United States each year are premature (6). The causes of premature birth are not thoroughly understood. Three groups of women are at greatest risk for premature birth:
In some cases, a pregnant woman may have health problems (such as high blood pressure), pregnancy complications (such as placental problems) or lifestyle factors (such as smoking) that increase her risk of delivering prematurely. More often, preterm labor develops unexpectedly in a pregnancy that had been problem-free.
Premature babies, especially those born at less than 32 weeks of pregnancy and weighing less than 3 1/3 pounds, may develop serious complications that can sometimes cause neonatal death. Some of these complications include:
While deaths due to prematurity are still too common, the outlook for premature babies is improving. Surfactant and other treatments are saving more premature babies after birth. And treatment before birth can sometimes prevent or lessen the complications of prematurity. Women who are likely to deliver between 24 and 34 weeks of pregnancy can be treated at least several days before delivery with drugs called corticosteroids, which speed maturation of fetal lungs (8). Studies show this treatment reduces RDS, brain bleeds and infant deaths (8).
Birth defects cause about 20 percent of neonatal deaths (2). Babies with birth defects may be premature or full term. Sometimes parents learn about their baby’s birth defects before birth from prenatal tests, such as ultrasound, amniocentesis and chorionic villus sampling (CVS).
Ultrasound uses sound waves to take a picture of the fetus. It can help diagnose structural birth defects, such as spina bifida (open spine), anencephaly (brain and skull defect), and heart or kidney defects. In amniocentesis, the doctor inserts a thin needle through the abdomen to obtain a small sample of amniotic fluid for testing. In CVS, the doctor takes a tiny sample of tissue from the developing placenta, either using a thin tube that is inserted through the vagina or a needle that is inserted through the abdomen. Amniocentesis and CVS are used to diagnose chromosomal abnormalities, such as Down syndrome, and many genetic birth defects.
Other causes of neonatal death include problems related to:
Leading causes of birth defect-related neonatal death include:
Parents of critically ill babies in the newborn intensive care unit (NICU) need support from family, friends and health care professionals. They should never hesitate to ask their baby’s doctors and nurses about their baby’s comfort and care. Parents may want to ask how they can share in their baby’s care so they can feel that they are helping their baby and creating memories of their baby. Some hospitals have support groups where parents of very sick newborns can share their feelings. Many also have support groups for parents of babies who have died. Parents who are having trouble coping with their grief, before or after the baby’s death, should ask their health care provider for a referral to a counselor who is experienced in dealing with infant death.
Some NICUs have a March of Dimes NICU Family Support project, which provides information and comfort to families with a baby in newborn intensive care. For information and resources, visit the Web site for NICU Family Support.
Parents also can visit Share Your Story, an online community for families who have or have had a baby in the NICU, including families who have experienced a loss.
Grieving parents can see or hold their baby after death. Some parents may find this comforting, but others may feel this is too upsetting. Parents should do what feels right to them. Providers may ask if the parents want certain mementos of their baby, such as a lock of hair, footprints, photos or a receiving blanket. Even if looking at these things around the time of death is painful, parents may eventually treasure these remembrances. Hospital staff also may provide information on options for burial or memorial services.
The baby’s doctors can tell parents what is known about the cause of the baby’s death. They may suggest an autopsy (internal examination after death) to find out more. An autopsy reveals new information about why the baby died in more than one-third of all cases (11). This information can be helpful for parents when they are planning another pregnancy and could possibly improve care in a future pregnancy.
Some parents are not comfortable with an autopsy and may choose not to have one. In these cases, other tests can help determine why the baby died. These tests include X-rays, an examination of the placenta and umbilical cord, and genetic tests. Some of these tests also are done along with an autopsy.
The doctors who cared for the newborn usually meet with the parents about 4 to 6 weeks after the baby’s death to discuss test results. At this time, they can answer the parents’ questions in detail. Doctors also can refer the family to counselors or support groups.
Parents whose baby had a birth defect should consider consulting a genetic counselor. These health professionals help families understand what is known about the causes of a birth defect and the chances that future babies could have the same birth defect. Genetic counselors can provide referrals to medical experts, as well as to appropriate support groups in the community. Genetic counseling is available at most large medical centers and teaching hospitals. To find a genetic counselor in their area, individuals can ask their health care provider or go to the Web site of the National Society of Genetic Counselors.
Share Your Story®, our online community where families who have lost a baby can talk to and comfort each other
When your baby dies at or after birth
The death of a baby is one of the most painful things that can happen to a family. It’s so unfair. Babies aren’t supposed to die. They are the beginning of life, not the end. It’s not what you planned or expected.
In the United States, birth defects, premature birth/low birthweight and sudden infant death syndrome (SIDS) are leading causes of babies in the first year of life. Experts are studying why these things happen and how to prevent them.
Give yourself plenty of time to grieve and heal. You may never really get over your baby’s death. But you can move through your grief to healing. As time passes, your pain eases. You can make a place in your heart and mind for the memories of your baby.
You may find that talking about your feelings helps you deal with your grief. Visit shareyourstory.org, our online community where families who have lost a baby can talk to and comfort each other. Sharing your baby’s story may ease your pain and help you heal.
You probably already have baby things at home, like clothes, blankets, toys and furniture. Leave them where they are until you're ready to put them away. There's no timeline. You can put them away in a few days, in a few weeks, in a few months - whenever you’re ready.
The death of a baby can be overwhelming. You may find it helpful to talk to someone about your feelings. Tell your partner how you feel. You may find comfort in knowing you’re healing together, even if you’re at different stages of grief. You also can turn to friends or family. They can offer a helping hand while you’re grieving or just be there to listen.
Reach out to your religious or spiritual leader. Your spiritual beliefs may be a comfort to you during this time. Go to your place of worship, such as a church, synagogue or mosque. Even your funeral home may offer support services for grieving families.
Join a support group. A support group is a group of people who have the same kind of concerns. Ask your provider to help you find a support group in your area. Or visit Share Your Story, an online community that includes families who’ve experience the loss of a baby.
If you think you may have depression, talk to your health care provider. Your provider can help treat your depression.