Neonatal Death

When a baby dies in the first 28 days of life, it is called neonatal death. In the United States in 2002, 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.

What are the most common causes of neonatal death?
Premature birth (before 37 completed weeks of pregnancy) is the most common cause of neonatal death. Prematurity and its complications cause almost 30 percent of neonatal deaths (2). The earlier a baby is born, the more likely he is to die. About 20 to 35 percent of babies born at 23 weeks of pregnancy survive, while about 50 to 70 percent of babies born at 24 to 25 weeks, and more than 90 percent born at 26 to 27 weeks, survive (1, 3).

About 12 percent of babies are born prematurely (4). The causes of premature delivery are not thoroughly understood. In some cases, a pregnant woman may have health problems (such as high blood pressure) or pregnancy complications (such as placental problems) that increase her risk of delivering prematurely. Women who have had a previous preterm delivery, are pregnant with twins (or other multiples), or have certain abnormalities of the uterus or cervix also are at increased risk. 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, often develop respiratory distress syndrome (RDS). About 23,000 babies develop RDS each year (4).

Babies with RDS have immature lungs that lack a protein called surfactant that keeps small air sacs in the lungs from collapsing. Treatment with surfactant has greatly reduced the number of babies who die from RDS. However, about 880 babies a year die in the neonatal period due to RDS (2).

About 25 percent of babies born preterm, usually before 32 weeks of pregnancy, develop bleeding in the brain called intraventricular hemorrhage (IVH)(5). While mild brain bleeds usually resolve themselves with no or few lasting problems, severe bleeds often result in brain damage or even death.

Some premature babies may develop an intestinal problem called necrotizing enterocolitis (NEC). Treatment with antibiotics and surgery can save many affected babies. However, some develop severe bowel damage and die.

Premature babies have immature immune systems and sometimes develop serious infections such as pneumonia (lung infection), sepsis (blood infection), and meningitis (infection of membranes surrounding the brain and spinal cord). In spite of treatment with antibiotics and antiviral drugs, some babies die.

While deaths due to prematurity are still too common, the outlook for these babies is improving. Surfactant and other treatments are saving more of these 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 should be treated at least several days before delivery with drugs called corticosteroids, which speed maturation of fetal lungs (6). Studies show this treatment reduces RDS, brain bleeds and infant deaths (6).

Birth defects cause about 21 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:

Complications of pregnancy
Complications involving the placenta, umbilical cord and membranes (bag of waters)
Infections
Asphyxia (lack of oxygen before or during birth) (2)
Which birth defects most commonly cause neonatal deaths?
Heart defects are the most common birth defect-related cause of infant death in the first year of life (7). Heart defects cause nearly one-third of infant deaths (2).

About 1 in every 125 babies is born with a heart defect (8). Because of improvements in the surgical treatment and medical management of these defects, most affected babies survive and do well. However, some babies with severe heart defects may not survive until surgery, or may not survive the surgery. Many babies who die of heart defects in the first month of life have a specific heart defect called hypoplastic left heart syndrome. In this heart defect, the main pumping chamber of the heart is too small to supply blood to the body. New surgical procedures are saving more babies with this heart defect, but many still die. In most cases, doctors do not know why a baby is born with a heart defect, although both genetic and environmental factors are believed to play a role.

Birth defects of the lungs are another common cause of neonatal death. Sometimes, one or both lungs does not develop at all or is malformed for reasons that are not known. In most cases, lung defects occur because other birth defects or pregnancy complications interfered with lung development. Many babies die due to complications that occur in immature lungs as a result of premature birth.

Chromosomal abnormalities are also a common cause of neonatal death. Humans normally have 46 chromosomes. Chromosomes are tiny thread-like structures in our cells that carry our genes; genes are the basic units of heredity that dictate all traits from eye color to workings of internal organs. However, sometimes a baby is born with too many or too few chromosomes. In most cases, an embryo with a chromosomal abnormality will not survive, and the pregnancy will end in miscarriage. In other cases, the baby survives until birth but dies in the early weeks of life.

For example, babies with an extra copy of chromosome 18 or chromosome 13 (called trisomy 18 or trisomy 13) have multiple birth defects and generally die in the first weeks or months of life. Babies with less severe chromosomal abnormalities, such as Down syndrome (trisomy 21), often survive, although affected children have mental retardation and other serious problems.

Birth defects involving the brain and central nervous system are another cause of neonatal death. One example is anencephaly, in which most of the brain and skull are missing. Affected babies may be stillborn (fetus died before birth) or die in the first days of life. This birth defect often can be detected before birth with a blood test, ultrasound or amniocentesis. Anencephaly may be prevented in subsequent pregnancies when the woman takes the B vitamin folic acid before and in the early months of pregnancy. A woman who has had a baby with anencephaly, or a related birth defect called spina bifida, should consult her health care provider before getting pregnant again to find out how much folic acid to take. Generally, a higher-than-normal dose is recommended (usually 4 milligrams) (9).

What support is available for parents who experience a loss?
Parents of critically ill babies in the neonatal 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 sick newborns and 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, comfort and services to families with a baby in the NICU. For information and resources from NICU Family Support, click here.

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.

What happens after the baby dies?
Grieving parents may be asked if they would like to 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 or a receiving blanket. Even if looking at these things now is painful, parents may eventually treasure these remembrances. The hospital staff also may provide information on options for burial or memorial services.

The baby's doctors will visit the parents in the hospital and tell them 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 (10). 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 can 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 the 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.

For additional support and information on neonatal death, parents can contact:

March of Dimes: Pregnancy and Newborn Loss
March of Dimes: Share Your Story
Learn more about the March of Dimes Campaign to Reduce Preterm Birth.

References

Matthews, T.J., et al. Infant Mortality Statistics from the 2002 Period Linked Birth/Infant Death Data Set. National Vital Statistics Reports, volume 53, number 10, November 24, 2005.
National Center for Health Statistics. 2002 Period Linked Birth/Infant Death Data.
Alexander, G.R., et al. U.S. Birth Weight/Gestational Age-Specific Neonatal Mortality: 1995-1997 Rates for Whites, Hispanics, and Blacks. Pediatrics, volume 111, number 1, January 2003, pages e61-66.
Martin, J.A., et al. Births: Final Data for 2003. National Vital Statistics Reports, volume 54, number 2, September 8, 2005.
Horbar, J.D., et al. Trends in Mortality and Morbidity for Very Low Birth Weight Infants, 1991-1999. Pediatrics, volume 110, number 1, July 2002, pages 143-151.
American Academy of Pediatrics (AAP) and American College of Obstetricians and Gynecologists (ACOG). Guidelines for Perinatal Care, Fifth Edition, Elk Grove Village, IL and Washington, DC, 2002.
Hoyert, D.L., et al. Deaths: Preliminary Data for 2003. National Vital Statistics Reports, volume 53, number 15, February 28, 2005.
American Heart Association. Congenital Heart Defects in Children, accessed 12/20/05.
Centers for Disease Control and Prevention (CDC). Folic Acid: Public Health Service, updated 7/26/05.
Laing, I.A. Clinical Aspects of Neonatal Death and Autopsy. Seminars in Neonatology, volume 9, 2004, pages 247-254.
March 2006