Skip to main content

Seriously Ill Children

Seriously Ill Children

What greater pain could mortals have than this: To see their children dead before their eyes?

Euripides

To a parent, the death of a child is an affront to the proper order of things. Children are supposed to outlive their parents, not the other way around. When a child comes into the world irreparably ill, what is a parent to do: insist on continuous medical intervention, hoping against hope that the child survives, or let nature take its course and allow the newborn to die? When a five-year-old child has painful, life-threatening disabilities, the parent is faced with a similar agonizing decision. That decision is the parent's to make, preferably with the advice of a sensitive physician. However, what if the ailing child is an adolescent who refuses further treatment for a terminal illness? Does a parent honor that wish? This chapter focuses on infant and child death, the conditions that often cause mortality at young ages, and medical decision making for seriously ill children.

INFANT MORTALITY AND LIFE EXPECTANCY AT BIRTH

Kenneth D. Kochanek and Joyce A. Martin of the Centers for Disease Control and Prevention (CDC) indicate in Supplemental Analysis of Recent Trends in Infant Mortality (January 11, 2007, http://www.cdc.gov/nchs/products/pubs/pubd/hestats/infantmort/infantmort.htm) that from 1933 through 2001 the U.S. infant mortality rate declined dramatically. In 1933 the infant mortality rate was 58.1 deaths per 1,000 live births. With each decade, infant mortality declined significantly, to 47 deaths per 1,000 live births in 1940, to 29.2 deaths per 1,000 live births in 1950, to eventually 6.8 deaths per 1,000 live births in 2001. This rate remained relatively steady through 2005. (See Table 5.1 and Table 5.2.)

Table 5.1 shows the decline in infant mortality rates from 1983 to 2004, and Table 5.2 shows figures for 2004 and preliminary figures for 2005. The data in these two tables differ slightly in some cases due to the use of somewhat different data sets.

Advances in neonatology (the medical subspecialty concerned with the care of newborns, especially those at risk), which date back to the 1960s, have contributed to the huge drop in infant death rates. Infants born prematurely or with low birth weights, who were once likely to die, now can survive life-threatening conditions because of the development of neonatal intensive care units. However, the improvements are not consistent for newborns of all races.

African-American infants are more than twice as likely as white and Hispanic infants to die before their first birthday. In 2004 the national death rate for African-American infants was 13.8 per 1,000 live births, compared to 5.7 for non-Hispanic white infants and 5.6 for Hispanic infants. (See Table 5.2.) In 2005 the national death rate for African-American infants was slightly lower than in 2004: 13.7 per 1,000 live births, compared to 5.7 for non-Hispanic white infants and 5.9 for Hispanic infants.

Native American or Alaskan Native infants are about one and half times as likely as white and Hispanic infants to die before their first birthday. In 2004 the national death rate for Native American or Alaskan Native infants was 8.4 per 1,000 live births, compared to 5.7 for white infants and 5.5 for Hispanic infants. (See Table 5.1.)

When are infants dying? Table 5.1 shows death rates during the neonatal period (under twenty-eight days after birth) and the postneonatal period (from twenty-eight days after birth to eleven months of age). The neonatal and postneonatal deaths together comprise the infant death rate. Of all infant deaths in 2004, two-thirds occurred during the neonatal period. For example, 4.5

TABLE 5.1
Infant, neonatal, and postneonatal mortality rates, by race and Hispanic origin of mother, selected years, 19832004

[Data are based on linked birth and death certificates for infants]
Race and Hispanic origin of mother 1983a 1985a 1990a 1995b 2000b 2002b 2003b 2004b
Infantc deaths per 1,000 live births
All mothers 10.9 10.4 8.9 7.6 6.9 7.0 6.8 6.8
White 9.3 8.9 7.3 6.3 5.7 5.8 5.7 5.7
Black or African American 19.2 18.6 16.9 14.6 13.5 13.8 13.5 13.2
American Indian or Alaska Native 15.2 13.1 13.1 9.0 8.3 8.6 8.7 8.4
Asian or Pacific Islanderd 8.3 7.8 6.6 5.3 4.9 4.8 4.8 4.7
Chinese 9.5 5.8 4.3 3.8 3.5 3.0
Japanese * 5.6 * 6.0 * 5.5 * 5.3 * 4.5 * 4.9
Filipino 8.4 7.7 6.0 5.6 5.7 5.7
Hawaiian 11.2 * 9.9 * 8.0 * 6.5 9.0 9.6
Other Asian or Pacific Islander 8.1 8.5 7.4 5.5 4.8 4.7
Hispanic or Latinoe,f 9.5 8.8 7.5 6.3 5.6 5.6 5.6 5.5
Mexican 9.1 8.5 7.2 6.0 5.4 5.4 5.5 5.5
Puerto Rican 12.9 11.2 9.9 8.9 8.2 8.2 8.2 7.8
Cuban 7.5 8.5 7.2 5.3 4.6 3.7 4.6 4.6
Central and South American 8.5 8.0 6.8 5.5 4.6 5.1 5.0 4.6
Other and unknown Hispanic or Latino 10.6 9.5 8.0 7.4 6.9 7.1 6.7 6.7
Not Hispanic or Latino:
Whitef 9.2 8.6 7.2 6.3 5.7 5.8 5.7 5.7
Black or African Americanf 19.1 18.3 16.9 14.7 13.6 13.9 13.6 13.6
Neonatalc deaths per 1,000 live births
All mothers 7.1 6.8 5.7 4.9 4.6 4.7 4.6 4.5
White 6.1 5.8 4.6 4.1 3.8 3.9 3.9 3.8
Black or African American 12.5 12.3 11.1 9.6 9.1 9.3 9.2 8.9
American Indian or Alaska Native 7.5 6.1 6.1 4.0 4.4 4.6 4.5 4.3
Asian or Pacific Islanderd 5.2 4.8 3.9 3.4 3.4 3.4 3.4 3.2
Chinese 5.5 3.3 2.3 2.3 2.5 2.4
Japanese * 3.7 * 3.1 * 3.5 * 3.3 * 2.6 * 3.7
Filipino 5.6 5.1 3.5 3.4 4.1 4.1
Hawaiian * 7.0 * 5.7 * 4.3 * 4.0 * 6.2 * 5.6
Other Asian or Pacific Islander 5.0 5.4 4.4 3.7 3.4 3.3
Hispanic or Latinoe,f 6.2 5.7 4.8 4.1 3.8 3.8 3.9 3.8
Mexican 5.9 5.4 4.5 3.9 3.6 3.6 3.8 3.7
Puerto Rican 8.7 7.6 6.9 6.1 5.8 5.8 5.7 5.3
Cuban * 5.0 6.2 5.3 * 3.6 * 3.2 * 3.2 3.4 * 2.8
Central and South American 5.8 5.6 4.4 3.7 3.3 3.5 3.6 3.4
Other and unknown Hispanic or Latino 6.4 5.6 5.0 4.8 4.6 5.1 4.7 4.7
Not Hispanic or Latino:
Whitef 5.9 5.6 4.5 4.0 3.8 3.9 3.8 3.7
Black or African Americanf 12.0 11.9 11.0 9.6 9.2 9.3 9.3 9.1
Postneonatalc deaths per 1,000 live births
All mothers 3.8 3.6 3.2 2.6 2.3 2.3 2.2 2.3
White 3.2 3.1 2.7 2.2 1.9 1.9 1.9 1.9
Black or African American 6.7 6.3 5.9 5.0 4.3 4.5 4.3 4.3
American Indian or Alaska Native 7.7 7.0 7.0 5.1 3.9 4.0 4.2 4.2
Asian or Pacific Islanderd 3.1 2.9 2.7 1.9 1.4 1.4 1.4 1.5
Chinese 4.0 * 2.5 * 2.0 * 1.5 * 1.0 * 0.7
Japanese * * 2.9 * * * *
Filipino * 2.8 2.7 2.5 2.2 1.6 1.7
Hawaiian * 4.2 * 4.3 * 3.8 * * * 4.0
Other Asian or Pacific Islander 3.0 3.0 3.0 1.9 1.4 1.4
Hispanic or Latinoe,f 3.3 3.2 2.7 2.1 1.8 1.8 1.7 1.7
Mexican 3.2 3.2 2.7 2.1 1.8 1.8 1.7 1.7
Puerto Rican 4.2 3.5 3.0 2.8 2.4 2.4 2.5 2.5
Cuban * 2.5 * 2.3 * 1.9 * 1.7 * * * * 1.7
Central and South American 2.6 2.4 2.4 1.9 1.4 1.6 1.4 1.2
Other and unknown Hispanic or Latino 4.2 3.9 3.0 2.6 2.3 2.0 1.9 2.0
Not Hispanic or Latino:
Whitef 3.2 3.0 2.7 2.2 1.9 1.9 1.9 2.0
Black or African Americanf 7.0 6.4 5.9 5.0 4.4 4.6 4.3 4.5

infants died per 1,000 live births of all mothers in 2004 during the neonatal period, compared to a total of 6.8 infant deaths per 1,000 live births of all mothers. This proportion of deaths occurring during the neonatal period was relatively consistent across race and Hispanic origin of the mother in 2004.

infants died per 1,000 live births of all mothers in 2004 during the neonatal period, compared to a total of 6.8 infant deaths per 1,000 live births of all mothers. This proportion of deaths occurring during the neonatal period was relatively consistent across race and Hispanic origin of the mother in 2004.

TABLE 5.1
Infant, neonatal, and postneonatal mortality rates, by race and Hispanic origin of mother, selected years, 19832004

[Data are based on linked birth and death certificates for infants]
Data not available.
* Estimates are considered unreliable. Rates preceded by an asterisk are based on fewer than 50 deaths in the numerator. Rates not shown are based on fewer than 20 deaths in the numerator.
a Rates based on unweighted birth cohort data.
b Rates based on a period file using weighted data.
c Infant (under 1 year of age), neonatal (under 28 days), and postneonatal (28 days11 months).
d Starting with 2003 data, estimates are not shown for Asian or Pacific Islander subgroups during the transition from single race to multiple race reporting.
e Persons of Hispanic origin may be of any race.
f Prior to 1995, data shown only for states with an Hispanic-origin item on their birth certificates.
Notes: The race groups white, black, American Indian or Alaska Native, and Asian or Pacific Islander include persons of Hispanic and non-Hispanic origin. Starting with 2003 data, some states reported multiple-race data. The multiple-race data for these states were bridged to the single-race categories of the 1977 Office of Management and Budget standards for comparability with other states. National linked files do not exist for 19921994. Data for additional years are available.
SOURCE: Adapted from Table 19. Infant, Neonatal, and Postneonatal Mortality Rates, by Detailed Race and Hispanic Origin of Mother: United States, Selected Years 19832004, in Health, United States, 2007. With Chart book on Trends in the Health of Americans, Centers for Disease Control and Prevention, National Center for Health Statistics, November 2007, http://www.cdc.gov/nchs/data/hus/hus07.pdf (accessed January 30, 2008)
TABLE 5.2
Infant deaths and infant mortality rates, by age, race, and Hispanic origin, 2004 and 2005

[Data are based on the continuous file of records received from the states. Rates per 1,000 live births.]
2005 2004
Age, race, and Hispanic origin Number Rate Number Rate
a Includes races other than white or black.
b Includes all persons of Hispanic origin of any race.
Notes: Data are subject to sampling or random variation. Figures for 2005 are based on weighted data rounded to the nearest individual, so categories may not add to totals. Race and Hispanic origin are reported separately on both the birth and death certificate. Rates for Hispanic origin should be interpreted with caution because of the inconsistencies between reporting Hispanic origin on birth and death certificates. Race categories are consistent with the 1977 Office of Management and Budget (OMB) standards. Multiple-race data were reported for deaths by 21 states and the District of Columbia in 2005 and by 15 states in 2004, and for births, by 19 states in 2005 and by 15 states in 2004. The multiple-race data for these states were bridged to the single-race categories of the 1977 OMB standards for comparability with other states.
SOURCE: Hsiang-Ching Kung et al., Table 4. Infant Deaths and Infant Mortality Rates, by Age, Race, and Hispanic Origin: United States, Final 2004 and Preliminary 2005, in Deaths: Preliminary Data for 2005, Centers for Disease Control and Prevention, National Center for Health Statistics, September 2007, http://www.cdc.gov/nchs/data/hestat/preliminarydeaths05_tables.pdf#1 (accessed February 1, 2008)
All races a
Under 1 year 28,534 6.89 27,936 6.79
Under 28 days 18,834 4.55 18,593 4.52
28 days11 months 9,699 2.34 9,343 2.27
Total white
Under 1 year 18,623 5.76 18,231 5.66
Under 28 days 12,317 3.81 12,198 3.78
28 days11 months 6,307 1.95 6,033 1.87
Non-Hispanic white
Under 1 year 13,092 5.73 13,046 5.68
Under 28 days 8,563 3.75 8,638 3.76
28 days11 months 4,529 1.98 4,408 1.92
Total black
Under 1 year 8,663 13.69 8,494 13.79
Under 28 days 5,717 9.04 5,622 9.13
28 days11 months 2,946 4.66 2,872 4.66
Hispanic b
Under 1 year 5,782 5.88 5,321 5.62
Under 28 days 3,897 3.96 3,633 3.84
28 days11 months 1,885 1.92 1,688 1.78

Life expectancy is the age to which people born in a particular year in a particular location can anticipate living. Infants born in the United States in 2005 are expected to live an average of 77.9 years, up from 77.8 years in 2004. (See Table 5.3.) However, those in certain groups have slightly different life expectancies. Females have a longer life expectancy than males. Female infants born in 2005 are expected to live for 80.4 years, whereas

TABLE 5.3
Deaths and life expectancy at birth, by race and sex; infant deaths and mortality rates, by race, 2004 and 2005

[Data are based on a continuous file of records received from the states. Figures for 2005 are based on weighted data rounded to the nearest individual, so categories may not add to totals]
All racesa Whiteb Blackc
2005 2004 2005 2004 2005 2004
a Includes races other than white and black.
b Race categories are consistent with the 1977 Office of Management and Budget (OMB) standards. Multiple-race data were reported in 2005 for California, Connecticut, the District of Columbia, Florida, Hawaii, Idaho, Kansas, Maine, Michigan, Minnesota, Montana, Nebraska, New Hampshire, New Jersey, New York, Oklahoma, South Carolina, South Dakota, Utah, Washington, Wisconsin, and Wyoming; and in 2004, for California, Hawaii, Idaho, Maine, Michigan, Minnesota, Montana, New Hampshire, New Jersey, New York, Oklahoma, South Dakota, Washington, Wisconsin, and Wyoming. The multiple-race data for these reporting areas were bridged to the single-race categories of the 1977 OMB standards for comparability with other reporting areas.
c Age-adjusted death rates are per 100,000 U.S. standard population, based on the year 2000 standard.
d Life expectancy at birth stated in years.
e Infant mortality rates are deaths under 1 year of age per 1,000 live births in specified group.
SOURCE: Hsiang-Ching Kung et al., Table A. Deaths, Age-Adjusted Death Rates, and Life Expectancy at Birth, by Race and Sex; and Infant Deaths and Mortality Rates, by Race: United States, Final 2004 and Preliminary 2005, in Deaths: Preliminary Data for 2005, Centers for Disease Control and Prevention, National Center for Health Statistics, September 2007, http://www.cdc.gov/nchs/data/hestat/preliminarydeaths05_tables.pdf#1 (accessed February 1, 2008)
All deaths 2,447,903 2,397,615 2,099,812 2,056,643 291,287 287,315
Male 1,207,548 1,181,668 1,029,025 1,007,266 148,270 145,970
Female 1,240,355 1,215,947 1,070,787 1,049,377 143,017 141,345
Age-adjusted death rate c 798.8 800.8 786.0 786.3 1,011.3 1,027.3
Male 951.0 955.7 933.9 936.9 1,245.8 1,269.4
Female 677.6 679.2 667.1 666.9 841.7 855.3
Life expectancy at birth d 77.9 77.8 78.3 78.3 73.2 73.1
Male 75.2 75.2 75.7 75.7 69.6 69.5
Female 80.4 80.4 80.8 80.8 76.5 76.3
All infant deaths 28,534 27,936 18,623 18,231 8,663 8,494
Infant mortality ratee 6.89 6.79 5.76 5.66 13.69 13.79

males born in that same year are expected to live for 75.2 years. White infants born in 2005 are expected to live 78.3 years, whereas

African-American infants are expected to live 73.2 years. The male-female life expectancy differences exist among these groups as well.

CAUSES OF INFANT MORTALITY

Birth defects are the leading cause of infant mortality in the United States. Birth defects are abnormalities of structure, function, or metabolism present at birth. In 2005 these congenital problems accounted for 5,562 (19.5%) out of 28,534 total causes of infant deaths. (See Table 5.4.) Birth defects are listed in Table 5.4 as congenital malformations, deformations, and chromosomal abnormalities.

Some of the more serious birth defects are anencephaly (absence of the majority of the brain) and spina bifida (incomplete development of the back and spine). Down syndrome, a condition in which babies are born with an extra copy of chromosome 21 in their cells, results in anatomical and developmental problems along with cognitive deficits. Down syndrome children may be born with birth defects that are fatal, including defects of the heart, lungs, and gastrointestinal tract. However, many Down syndrome children live well into adulthood.

According to the CDC, in Birth Defects (2008, http://www.cdc.gov/ncbddd/bd/default.htm), one out of every thirty-three babies born in the United States each year have birth defects. The CDC notes that babies born with birth defects are more likely to have poor health and long-term disabilities than babies born without birth defects.

Disorders related to short gestation (premature birth) and low birth weight accounted for the second-leading cause of infant mortality in 2005out of a total of 28,534 infant deaths, 4,709 babies died from these disorders. (See Table 5.4.) Among African-American infants, these disorders were the leading cause of infant death (1,881 out of 8,655 infant deaths from all causes). Other causes of infant deaths were sudden infant death syndrome, maternal complications of pregnancy, and complications of the placenta, cord, and membranes. These five leading causes of infant mortality accounted for more than half (53.5%) of the total infant deaths in all races in 2005.

BIRTH DEFECTS

The March of Dimes Birth Defects Foundation, a national volunteer organization that seeks to improve infant health by preventing birth defects and lowering infant mortality rates, reports in Birth Defects (April 2006, http://www.marchofdimes.com/pnhec/4439_1206.asp) that about 120,000 babies are born annually in the United States with birth defects. Some birth defects have genetic causesinherited abnormalities such as Tay-Sachs

TABLE 5.4
Ten leading causes of infant deaths and infant mortality rates, by race and Hispanic origin, 2005

[Data are based on a continuous file of records received from the states. Rates are per 100,000 live births.]
Rank a Cause of death, race, and Hispanic origin Number Rate
All racesb
All causes 28,534 689.2
1 Congenital malformations, deformations and chromosomal abnormalities 5,562 134.3
2 Disorders related to short gestation and low birth weight, not elsewhere classified 4,709 113.7
3 Sudden infant death syndrome 2,107 50.9
4 Newborn affected by maternal complications of pregnancy 1,786 43.1
5 Newborn affected by complications of placenta, cord and membranes 1,111 26.8
6 Accidents (unintentional injuries) 1,069 25.8
7 Respiratory distress of newborn 861 20.8
8 Bacterial sepsis of newborn 834 20.1
9 Neonatal hemorrhage 664 16.0
10 Necrotizing enterocolitis of newborn 549 13.3
All other causes (residual) 9,282 224.2
Total white
All causes 18,634 576.6
1 Congenital malformations, deformations and chromosomal abnormalities 4,194 129.8
2 Disorders related to short gestation and low birth weight, not elsewhere classified 2,628 81.3
3 Sudden infant death syndrome 1,404 43.4
4 Newborn affected by maternal complications of pregnancy 1,060 32.8
5 Newborn affected by complications of placenta, cord and membranes 761 23.5
6 Accidents (unintentional injuries) 721 22.3
7 Respiratory distress of newborn 539 16.7
8 Bacterial sepsis of newborn 525 16.2
9 Neonatal hemorrhage 463 14.3
10 Intrauterine hypoxia and birth asphyxia 384 11.9
All other causes (residual) 5,955 184.3
Non-Hispanic white
All causes 13,103 573.6
1 Congenital malformations, deformations and chromosomal abnormalities 2,855 125.0
2 Disorders related to short gestation and low birth weight, not elsewhere classified 1,790 78.4
3 Sudden infant death syndrome 1,152 50.4
4 Newborn affected by maternal complications of pregnancy 755 33.0
5 Accidents (unintentional injuries) 561 24.6
6 Newborn affected by complications of placenta, cord and membranes 545 23.9
7 Respiratory distress of newborn 387 16.9
8 Bacterial sepsis of newborn 357 15.6
9 Neonatal hemorrhage 332 14.5
10 Intrauterine hypoxia and birth asphyxia 288 12.6
All other causes (residual) 4,081 178.6
Total black
All causes 8,655 1,368.1
1 Disorders related to short gestation and low birth weight, not elsewhere classified 1,881 297.3
2 Congenital malformations, deformations and chromosomal abnormalities 1,080 170.7
3 Newborn affected by maternal complications of pregnancy 658 104.0
4 Sudden infant death syndrome 633 100.1
5 Newborn affected by complications of placenta, cord and membranes 321 50.7
6 Accidents (unintentional injuries) 312 49.3
7 Respiratory distress of newborn 293 46.3
8 Bacterial sepsis of newborn 270 42.7
9 Necrotizing enterocolitis of newborn 208 32.9
10 Neonatal hemorrhage 170 26.9
All other causes (residual) 2,829 447.2

disease (a fatal disease that generally affects children of east European Jewish ancestry) or chromosomal irregularities such as Down syndrome. Other birth defects result from environmental factorsinfections during pregnancy, such as rubella (German measles), or drugs used by the pregnant woman. The specific causes of many birth defects are unknown, but scientists think that many result from a combination of genetic and environmental factors. Even though many birth defects are impossible to prevent, some can be avoided, such as those caused by maternal alcohol and drug consumption during pregnancy.

Two types of birth defects that have been the subject of considerable ethical debate are neural tube defects and permanent disabilities coupled with operable but life-threatening factors. An example of the latter is Down syndrome.

Neural Tube Defects

Neural tube defects (NTDs) are abnormalities of the brain and spinal cord resulting from the failure of the neural tube to develop properly during early pregnancy. The neural tube is the embryonic nerve tissue that develops into

TABLE 5.4
Ten leading causes of infant deaths and infant mortality rates, by race and Hispanic origin, 2005

[Data are based on a continuous file of records received from the states. Rates are per 100,000 live births.]
Rank a Cause of death, race, and Hispanic origin Number Rate
Category not applicable.
a Rank based on number of deaths.
b Includes races other than white and black.
c Includes all persons of Hispanic origin of any race.
Notes: Figures are based on weighted data rounded to the nearest individual, so categories may not add to totals or subtotals. Race and Hispanic origin are reported separately on both the birth and death certificate. Rates for Hispanic origin should be interpreted with caution because of inconsistencies between reporting Hispanic origin on birth and death certificates. Race categories are consistent with the 1977 Office of Management and Budget(OMB) standards. Multiple-race data were reported for deaths by 21 states and the District of Columbia and for births by 19 states. The multiple-race data for these states were bridged to the single-race categories of the 1977 OMB standards for comparability with other states. Data for persons of Hispanic origin are included in the data for each race group, according to the decedent's reported race. For certain causes of death such as unintentional injuries, homicides, suicides, and respiratory diseases, preliminary and final data differ because of the truncated nature of the preliminary file. Data are subject to sampling or random variation.
SOURCE: Hsiang-Ching Kung et al., Table 8. Infant Deaths and Infant Mortality Rates for the 10 Leading Causes of Infant Death, by Race and Hispanic Origin: United States, Preliminary 2005, in Deaths: Preliminary Data for 2005, Centers for Disease Control and Prevention, National Center for Health Statistics, September 2007, http://www.cdc.gov/nchs/data/hestat/preliminarydeaths05_tables.pdf#1 (accessed February 1, 2008)
Hispanic c
All causes 5,784 588.5
1 Congenital malformations, deformations and chromosomal abnormalities 1,385 140.9
2 Disorders related to short gestation and low birth weight, not elsewhere classified 890 90.6
3 Newborn affected by maternal complications of pregnancy 322 32.8
4 Sudden infant death syndrome 257 26.1
5 Newborn affected by complications of placenta, cord and membranes 224 22.8
6 Bacterial sepsis of newborn 173 17.6
7 Respiratory distress of newborn 166 16.9
8 Accidents (unintentional injuries) 164 16.7
9 Neonatal hemorrhage 138 14.0
10 Necrotizing enterocolitis of newborn 110 11.2
All other causes (residual) 1,955 198.9

the brain and the spinal cord. The CDC states in Spina Bifida and Anencephaly before and after Folic Acid MandateUnited States, 19951996 and 19992000 (Morbidity and Mortality Weekly Report, vol. 53, no. 17, May 7, 2004) that between 1995 and 1996 four thousand pregnancies were affected with NTDs. This number dropped to three thousand between 1999 and 2000. The CDC suggests that this decline was due to an increase in folic acid consumption by pregnant women during these years.

The CDC notes that folic acid can prevent 50% to 70% of NTDs if women contemplating pregnancy consume sufficient folic acid before conception and then throughout the first trimester of pregnancy. Thus, in 1992 the U.S. Public Health Service recommended that all women capable of becoming pregnant consume four hundred micrograms of folic acid daily. In addition, the U.S. Food and Drug Administration mandated that as of January 1998 all enriched cereal grain products be fortified with folic acid.

The two most common NTDs are anencephaly and spina bifida.

ANENCEPHALY. Anencephalic infants die before birth (in utero or stillborn) or shortly thereafter. The incidence of anencephaly decreased significantly from 18.4 cases per 100,000 live births in 1991 to 9.4 cases per 100,000 live births in 2001. (See Figure 5.1 and Table 5.5.) The largest drop during this period was from 1991 to 1992. Between 1993 and 2001 the general trend was downward. In 2002 the rates began to rise a bit, from 9.6 cases per 100,000 live births in 2002 to 11.1 cases per 100,000 live births in 2005. Nonetheless, the CDC explains in Trends in Spina Bifida and Anencephalus in the United States that this slight increase is statistically insignificant, meaning that the differences are unimportant and could have occurred by chance alone.

Issues of brain death and organ donation sometimes surround anencephalic infants. One case that gained national attention was that of Theresa Ann Campo in 1992. Before their daughter's birth, Theresa's parents discovered through prenatal testing that their baby would be born without a fully developed brain. They decided to carry the fetus to term and donate her organs for transplantation. When baby Theresa was born, her parents asked for her to be declared brain dead. However, Theresa's brain stem was still functioning, so the court ruled against the parents' request. Baby Theresa died ten days later and her organs were not usable for transplant because they had deteriorated as a result of oxygen deprivation.

Some physicians and ethicists agree that even if anencephalic babies have a brain stem, they should be considered brain dead. Lacking a functioning higher brain, these babies can feel nothing and have no consciousness. Others fear that declaring anencephalic babies dead could be the start of a slippery slope that might eventually include babies with other birth defects in the same category. Other people are concerned that anencephalic babies may be kept alive for the purpose of harvesting their organs for transplant at a later date.

SPINA BIFIDA. Spina bifida, which literally means divided spine, is caused by the failure of the vertebrae (backbone) to completely cover the spinal cord early in fetal development, leaving the spinal cord exposed. Depending on the amount of nerve tissue exposed, spina bifida defects range from minor developmental disabilities to paralysis.

Before the advent of antibiotics in the 1950s, most babies with severe spina bifida died soon after birth. With antibiotics and many medical advances, some of these newborns can be saved.

The treatment of newborns with spina bifida can pose serious ethical problems. Should an infant with a milder form of the disease be treated actively and another with severe defects be left untreated? In severe cases, should the newborn be sedated and not be given nutrition and hydration until death occurs? Or should this seriously disabled infant be cared for while suffering from bladder and bowel malfunctions, infections, and paralysis? What if infants who have been left to die unexpectedly survive? Would they be more disabled than if they had been treated right away?

The development of fetal surgery to correct spina bifida before birth added another dimension to the debate. There are risks for both the mother and the fetus during and after fetal surgery, but techniques have improved since the first successful surgery of this type in 1997. In 2003 the National Institute of Child Health and Human Development began funding the Management of Myelomeningocele Study (http://www.spinabifidamoms.com/english/index.html) to compare the progress between babies who have prenatal (prebirth) surgery and those who have postnatal (after birth) surgery. The study was ongoing as of May 2008.

Figure 5.2 and Table 5.6 show that spina bifida rates increased from 22.8 cases per 100,000 live births in 1992

TABLE 5.5
Number of live births, anencephalus cases, and anencephalus rates, 19912005
Year Anencephalus cases Total live births Rate
Note: Excludes data for Maryland, New Mexico, and New York, which did not require reporting for anencephalus for some years.
SOURCE: Adapted from T.J. Mathews, Table 2. Number of Live Births and Anencephalus Cases and Rates per 100,000 Live Births for the United States, 19912005, in Trends in Spina Bifida and Anencephalus in the United States, 19912005, Centers for Disease Control and Prevention, National Center for Health Statistics, December 2007, http://www.cdc.gov/nchs/data/hestat/spine_anen_tables.pdf#2 (accessed February 1, 2008)
2005 432 3,887,109 11.11
2004 401 3,860,720 10.39
2003 441 3,715,577 11.14
2002 348 3,645,770 9.55
2001 343 3,640,555 9.42
2000 376 3,640,376 10.33
1999 382 3,533,565 10.81
1998 349 3,519,240 9.92
1997 434 3,469,667 12.51
1996 416 3,478,723 11.96
1995 408 3,484,539 11.71
1994 387 3,527,482 10.97
1993 481 3,562,723 13.50
1992 457 3,572,890 12.79
1991 655 3,564,453 18.38

to 28 cases per 100,000 live births in 1995, but after 1995 the rates declined significantly to 20.7 cases per 100,000 live births in 1999. Even though the CDC explains in Trends in Spina Bifida and Anencephalus in the United States that the decline from 1999 to 2005 was statistically insignificant, the rate for 2005 (eighteen cases per one hundred thousand live births) was the lowest ever reported. As mentioned earlier, the decline in spina bifida rates is an indicator of successful efforts to prevent this defect by increasing folic acid consumption among women of childbearing age.

TABLE 5.6
Number of live births, spina bifida cases, and spina bifida rates, 19912005
Year Spina bifida cases Total live births Rate
Note: Excludes data for Maryland, New Mexico, and New York, which did not require reporting for spina bifida for some years.
SOURCE: Adapted from T.J. Mathews, Table 1. Number of Live Births and Spina Bifida Cases and Rates per 100,000 Live Births for the United States, 19912005, in Trends in Spina Bifida and Anencephalus in the United States, 19912005, Centers for Disease Control and Prevention, National Center for Health Statistics, December 2007, http://www.cdc.gov/nchs/data/hestat/spine_anen_tables.pdf#1 (accessed February 1, 2008)
2005 698 3,887,109 17.96
2004 755 3,860,720 19.56
2003 702 3,715,577 18.89
2002 734 3,645,770 20.13
2001 730 3,640,555 20.05
2000 759 3,640,376 20.85
1999 732 3,533,565 20.72
1998 790 3,519,240 22.45
1997 857 3,469,667 24.70
1996 917 3,478,723 26.36
1995 975 3,484,539 27.98
1994 900 3,527,482 25.51
1993 896 3,562,723 25.15
1992 816 3,572,890 22.84
1991 887 3,564,453 24.88

Down Syndrome

Down syndrome is a condition caused by chromosomal irregularities that occur during cell division of either the egg or the sperm before conception. Instead of the normal forty-six chromosomes, Down syndrome newborns have an extra copy of chromosome 21, giving them a total of forty-seven chromosomes. Along with having certain anatomical differences from non-Down syndrome children, Down children have varying degrees of mental retardation and approximately 40% have congenital heart diseases.

In Risk Factors for Down Syndrome (Trisomy 21): Maternal Cigarette Smoking and Oral Contraceptive Use in a Population-Based Case-Control Study (October 5, 2005, http://www.cdc.gov/ncbddd/bd/ds.htm), the CDC estimates the prevalence of Down syndrome as approximately one out of eight hundred live births. The occurrence of this genetic condition rises with increasing maternal age, with a marked increase seen in children of women over thirty-five years of age.

Robert Barnhart and Barbara Connolly report in Aging and Down Syndrome: Implications for Physical Therapy (Physical Therapy, vol. 87, no. 10, October 2007) that the life expectancy of people with Down syndrome has increased over the decades, from an average of nine years of age in 1929 to fifty-five years in 2007. Except for the most severe heart defects, many other problems accompanying Down syndrome may be corrected by surgery and helped with exercise, strength training, and a healthy diet. Depending on the degree of mental retardation, many people with Down syndrome are able to hold jobs and live independently.

Birth Defects and National Laws

In April 1998 President Bill Clinton (1946) signed into law the Birth Defects Prevention Act, which authorized a nationwide network of birth defects research and prevention programs and called for a nationwide information clearinghouse on birth defects.

The Children's Health Act of 2000 authorized expanded research and services for a variety of childhood health problems. In addition, it created the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC. Developmental disabilities are conditions that impair day-to-day functioning, such as difficulties with communication, learning, behavior, and motor skills. They are chronic conditions that initially appear in people aged eighteen years and younger.

The Birth Defects and Developmental Disabilities Prevention Act of 2003 revised and extended the Birth Defects Prevention Act of 1998. It also reauthorized the NCBDDD from 2004 to 2008. The NCBDDD works with state health departments, academic institutions, and other public health partners to monitor birth defects and developmental disabilities, as well as to support research to identify their causes or risk factors. In addition, the center develops strategies and promotes programs to prevent birth defects and developmental disabilities.

The Economic Cost of Long-Term Care for Birth Defects and Developmental Disabilities

In Increased Risk for Developmental Disabilities in Children Who Have Major Birth Defects: A Population-Based Study (Pediatrics, vol. 108, no. 3, September 2001), Pierre Decoufle´ et al. examine selected developmental disabilities associated with major birth defects. The investigators combined data from two independent population-based surveillance systems to determine if major birth defects were associated with serious developmental disabilities.

When compared to children who had no major birth defects, the prevalence of developmental disabilities among children with major birth defects was extremely high. Decoufle´ et al. observe that conditions such as mental retardation, cerebral palsy (a disorder marked by muscular impairment usually caused by brain damage), epilepsy (a disorder of the brain that results in seizures), autism (a brain disorder that affects communication, social interaction, and imaginative play), profound hearing loss, and legal blindness prove costly in terms of special education services, medical and supportive care, demands on caregivers, and economic loss to society. They conclude, Our data suggest that birth defects pose a greater burden on society than previously recognized.

In a similar study, Beverly Petterson et al. investigated the degree to which intellectual disabilities and birth defects occurred together and published their results in Co-occurrence of Birth Defects and Intellectual Disability (Paediatric and Perinatal Epidemiology, vol. 21, no. 1, January 2007). The researchers determine that birth defects were present in nearly one-third of children with intellectual disabilities. Looking at the statistics from a birth defects standpoint, children with chromosomal abnormalities, such as Down syndrome, were more likely to have intellectual disabilities than children with non-chromosomal birth defects, such as spina bifida. Petterson et al. show that 97% of Down syndrome children have intellectual disabilities, whereas 18.8% of children with spina bifida do. Children with birth defects of the nervous system, although not chromosomal in origin, also had a high incidence of intellectual disabilities (38.6%).

Most people with birth defects and/or developmental disabilities require long-term care or services. Table 5.7 shows the economic costs of mental retardation, cerebral palsy, hearing loss, and vision impairment in 2003. Of these four developmental disabilities, mental retardation had the highest rate of occurrence, at twelve affected children per one thousand children aged five to ten years, and the highest cost, at over $1 million per person.

LOW BIRTH WEIGHT AND PREMATURITY

Low Birth Weight

In Births: Final Data for 2005 (National Vital Statistics Reports, vol. 56, no. 6, December 5, 2007), Joyce A. Martin et al. of the CDC indicate that infants who weigh less than twenty-five hundred grams (five pounds, eight ounces) at birth are considered to be of low birth weight. Those born weighing less than fifteen hundred grams (three pounds, four ounces) have very low birth weight. Babies born with low birth weights are more likely to die within their first year or have long-term disabilities than babies not born with low birth weight.

Low birth weight may result from various causes, including premature birth, poor maternal nutrition, teen pregnancy, drug and alcohol use, smoking, or sexually transmitted diseases. Martin et al. note that in 2005 teens had a higher percentage of low-birth-weight babies than women between the ages of twenty and thirty-nine years. (See Table 5.8.) According to the CDC, from 1990 through 2004 cigarette smokers consistently had a higher

TABLE 5.7
Estimated prevalence and lifetime economic costs for certain developmental disabilities, by cost category, 2003
Developmental disability Ratea Direct medical costsb (millions) Direct nonmedical costsc (millions) Indirect costsd (millions) Total costs (millions) Average costs per person
Note: Lifetime economic costs are present value estimates, in 2003 dollars, of lifetime costs for persons born in 2000, based on a 3% discount rate.
a Per 1,000 children aged 510 years, on the basis of Metropolitan Atlanta Developmental Disabilities Surveillance Program data for 19911994.
b Includes physician visits, prescription medications, hospital inpatient stays, assistive devices, therapy and rehabilitation (for persons aged <18 years), and long-term care (for persons aged 1876 years), adjusted for age-specific survival.
c Includes costs of home and vehicle modifications for persons aged < 76 years and costs of special education for persons aged 317 years.
d Includes productivity losses from increased morbidity (i.e., inability to work or limitation in the amount or type of work performed) and premature mortality for persons aged 35 years with mental retardation, aged 25 years with cerebral palsy, and aged 17 years with hearing loss and vision impairment.
SOURCE: A. Honeycutt et al., Table. Estimated Prevalence and Lifetime Economic Costs for Mental Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment, by Cost CategoryUnited States, 2003, in Economic Costs Associated with Mental Retardation, Cerebral Palsy, Hearing Loss, and Vision ImpairmentUnited States, 2003, Morbidity and Mortality Weekly Report, vol. 53, no. 3, January 30, 2004, http://www.cdc.gov/mmwr/PDF/wk/mm5303.pdf (accessed February 28, 2008), and Errata: Vol. 53, No. 3, Morbidity and Mortality Weekly Report, vol. 55, no. 32, August 18, 2006, http://www.cdc.gov/mmwr/PDF/wk/mm5532.pdf (accessed February 28, 2008)
Mental retardation 12.0 $7,061 $5,249 $38,927 $51,237 $1,014,000
Cerebral palsy 3.0 1,175 1,054 9,241 11,470 921,000
Hearing loss 1.2 132 469 1,931 2,102 383,000
Vision impairment 1.1 159 652 2,636 2,484 601,000

percentage of low-birth-weight babies than nonsmokers (12.5% versus 7.8% in 2004) and a higher percentage of very-low-birth-weight babies (1.9% versus 1.5% in 2004). (See Table 5.9.)

According to Martin et al., 338,565 (8.2%) of the 4.1 million live births in 2005 were low-birth-weight infants, matching highs reported in the late 1960s and early 1970s. (See Table 5.8.) African-American (14%) mothers were about twice as likely as non-Hispanic white (7.3%) and Hispanic (6.9%) mothers to have low-birth-weight babies.

Martin et al. indicate that 1.5% of the babies born in 2005 were very-low-birth-weight infants. (See Table 5.10.) The proportion of very-low-birth-weight babies has been increasing since the 1980s, although rates stabilized from the late 1990s through 2004. (See Table 5.9.) Martin et al. report that the birth weight distribution in general has shifted toward lower birth weights since the early 1990s. The researchers explain that the shift is likely influenced by a variety of factors, including increases in the multiple birth rate, obstetric interventions such as induction of labor and cesarean delivery, older maternal age at childbearing and increased use of infertility therapies. In 2005 the highest percentage of low-birth-weight babies (21.1%) was with women between the ages of forty-five to fifty-four years. (See Table 5.8.)

Prematurity

The usual length of human pregnancy is forty weeks. Infants born before thirty-seven weeks of pregnancy are considered premature. A premature infant does not have fully formed organ systems. If the premature infant is born with a birth weight comparable to a full-term baby and has organ systems only slightly underdeveloped, the chances of survival are great. Conversely, premature infants of very low birth weight are susceptible to many risks and are less likely to survive. If they survive, they may suffer from mental retardation and other abnormalities of the nervous system.

A severe medical condition called respiratory distress syndrome (RDS) commonly affects premature infants born before thirty-five weeks of pregnancy. In RDS immature lungs do not function properly and may cause infant death within hours after birth. Intensive care includes the use of a mechanical ventilator to facilitate breathing. Premature infants also commonly have immature gastrointestinal systems, which preclude them from taking in nourishment properly. Unable to suck and swallow, they must be fed through a stomach tube.

WHO MAKES MEDICAL DECISIONS FOR INFANTS?

Before the 1980s in the United States, the courts were supportive of biological parents making decisions regarding the medical care of their newborns. Parents often made these decisions in consultation with pediatricians. Beginning in the 1970s medical advancements allowed for the survival of infants who would have not had a chance for survival before that time. Parents' and physicians' decisions became more challenging and complex.

The history of federal and state laws pertaining to the medical care of infants began in 1982 with the Baby Doe regulations. These regulations created a standard of medical care for infants: the possibility of future handicaps in a child should play no role in his or her medical treatment decisions.

The Baby Doe Rules

In April 1982 an infant with Down syndrome was born at Bloomington Hospital in Indiana. The infant also

TABLE 5.8
Number and percent of low birthweight and number of live births by age, race, and Hispanic origin of mother, 2005
Birthweight
Low birthweighta
Age and race and Hispanic origin of mother Number Percent Total Less than 500 grams 500999 grams 1,0001,499 grams 1,5001,999 grams 2,0002,499 grams 2,5002,999 grams 3,0003,499 grams 3,5003,999 grams 4,0004,499 grams 4,5004,999 grams 5,000 grams or more Not stated
All races b
All ages 338,565 8.2 4,138,349 6,599 23,864 31,325 66,453 210,324 748,042 1,596,944 1,114,887 289,098 42,119 4,715 3,979
Under 15 years 892 13.3 6,722 25 92 103 178 494 1,866 2,592 1,162 174 19 1 16
1519 years 41,525 10.0 414,593 867 3,209 3,707 7,710 26,032 94,910 169,715 89,144 16,745 1,876 186 492
15 years 2,100 11.5 18,249 61 190 215 401 1,233 4,528 7,441 3,538 563 44 5 30
16 years 4,484 10.9 41,064 75 406 412 849 2,742 9,911 16,837 8,218 1,405 141 14 54
17 years 7,597 10.3 73,878 146 586 656 1,435 4,774 17,218 30,472 15,420 2,786 266 32 87
18 years 11,814 10.1 116,476 275 861 1,065 2,155 7,458 26,370 47,978 25,003 4,623 501 50 137
19 years 15,530 9.4 164,926 310 1,166 1,359 2,870 9,825 36,883 66,987 36,965 7,368 924 85 184
2024 years 86,321 8.3 1,040,388 1,679 5,924 7,641 16,006 55,071 208,845 418,820 258,493 58,625 7,510 791 983
2529 years 83,247 7.4 1,131,596 1,674 5,745 7,430 16,036 52,362 194,306 438,676 318,052 83,072 11,888 1,299 1,056
3034 years 71,707 7.5 950,691 1,397 4,996 6,919 14,743 43,652 150,671 354,909 279,330 79,465 12,364 1,374 871
3539 years 42,140 8.7 483,156 776 3,017 4,241 8,961 25,145 77,876 173,727 139,211 42,023 6,891 848 440
4044 years 11,354 10.8 104,667 169 813 1,143 2,441 6,788 18,217 36,525 28,150 8,603 1,503 206 109
4554 years 1,379 21.1 6,536 12 68 141 378 780 1,351 1,980 1,345 391 68 10 12
Non Hispanic white c
All ages 166,101 7.3 2,279,768 2,497 10,015 14,967 33,687 104,935 364,726 857,136 672,270 187,269 27,541 2,840 1,885
Under 15 years 147 11.0 1,331 3 12 17 29 86 302 546 280 48 6 1 1
1519 years 14,950 9.1 165,005 288 1,056 1,335 2,839 9,432 33,650 66,161 40,392 8,589 996 97 170
15 years 491 10.4 4,702 13 56 46 108 268 1,001 1,908 1,078 190 22 2 10
16 years 1,238 9.8 12,675 23 104 126 243 742 2,692 5,078 2,996 595 51 7 18
17 years 2,573 9.7 26,487 48 183 225 516 1,601 5,400 10,618 6,437 1,286 137 13 23
18 years 4,419 9.3 47,329 104 292 399 828 2,796 9,552 19,125 11,493 2,396 274 25 45
19 years 6,229 8.4 73,812 100 421 539 1,144 4,025 15,005 29,432 18,388 4,122 512 50 74
2024 years 38,062 7.4 515,518 554 2,329 3,269 7,244 24,666 93,832 203,953 140,105 34,184 4,491 456 435
2529 years 42,408 6.6 642,553 681 2,533 3,716 8,356 27,122 98,844 243,625 195,010 53,749 7,654 778 485
3034 years 39,512 6.8 581,645 563 2,299 3,683 8,471 24,496 82,092 211,959 183,371 54,916 8,464 834 497
3539 years 23,812 7.8 305,142 327 1,357 2,288 5,180 14,660 44,818 107,484 93,825 29,617 4,826 526 234
4044 years 6,320 9.8 64,352 75 388 582 1,315 3,960 10,345 22,154 18,386 5,900 1,055 139 53
4554 years 890 21.1 4,222 6 41 77 253 513 843 1,254 901 266 49 9 10
Non Hispanic black c
All ages 81,674 14.0 583,759 2,477 8,014 8,573 15,764 46,846 144,803 221,819 108,698 22,149 3,203 405 1,008
Under 15 years 463 17.2 2,697 15 54 50 95 249 862 960 358 43 1
1519 years 14,165 14.6 96,813 376 1,301 1,355 2,655 8,478 27,382 37,832 14,867 2,151 205 24 187
15 years 836 14.9 5,602 29 77 87 162 481 1,664 2,157 811 114 5 1 14
16 years 1,636 15.1 10,829 35 158 149 310 984 3,156 4,193 1,605 200 19 1 19
17 years 2,597 14.6 17,747 67 244 244 454 1,588 5,024 7,035 2,634 387 32 4 34
18 years 3,950 14.8 26,627 101 336 391 742 2,380 7,494 10,413 4,065 592 55 6 52
19 years 5,146 14.3 36,008 144 486 484 987 3,045 10,044 14,034 5,752 858 94 12 68
2024 years 25,779 13.7 188,673 724 2,280 2,595 4,788 15,392 49,573 73,820 32,629 5,736 749 78 309
2529 years 18,740 13.1 142,885 602 1,820 1,939 3,603 10,776 33,955 54,436 28,316 6,178 897 117 246
3034 years 12,643 13.7 92,336 454 1,423 1,442 2,541 6,783 19,954 33,948 20,012 4,729 786 108 156
3539 years 7,507 15.8 47,411 254 906 901 1,527 3,919 10,226 16,513 9,940 2,618 461 67 79
4044 years 2,212 18.0 12,256 50 217 272 513 1,160 2,693 4,092 2,464 662 103 10 20
4554 years 165 24.0 688 2 13 19 42 89 158 218 112 32 1 1 1
Hispanic d
All ages 67,796 6.9 985,505 1,212 4,586 5,988 12,710 43,300 176,438 399,295 266,338 64,704 9,167 1,174 593
Under 15 years 252 10.2 2,466 6 22 34 48 142 642 1,000 483 75 11
1519 years 10,980 8.0 136,906 177 752 908 1,950 7,193 30,356 59,319 30,279 5,246 570 50 106
15 years 714 9.9 7,241 17 53 73 118 453 1,714 3,072 1,499 223 14 1 4
16 years 1,453 9.1 15,928 17 136 125 275 900 3,705 6,895 3,257 540 63 5 10
17 years 2,154 8.0 26,877 29 136 168 401 1,420 6,133 11,744 5,741 988 80 12 25
18 years 3,045 8.0 38,090 60 210 249 515 2,011 8,373 16,618 8,443 1,425 140 14 32
19 years 3,614 7.4 48,770 54 217 293 641 2,409 10,431 20,990 11,339 2,070 273 18 35
2024 years 18,731 6.5 287,896 319 1,095 1,494 3,377 12,446 54,868 121,320 74,552 16,127 1,910 220 168
2529 years 16,305 6.1 266,590 291 1,133 1,365 3,060 10,456 44,209 107,357 76,211 19,248 2,770 330 160
3034 years 12,624 6.8 186,398 267 922 1,262 2,386 7,787 29,198 71,610 54,816 15,260 2,460 333 97
3539 years 6,967 8.1 85,739 121 521 719 1,464 4,142 13,733 31,697 24,717 7,194 1,185 199 47
4044 years 1,799 9.7 18,597 29 131 188 388 1,063 3,250 6,678 5,070 1,497 249 42 12
4554 years 138 15.1 913 2 10 18 37 71 182 314 210 57 12
TABLE 5.8
Number and percent of low birthweight and number of live births by age, race, and Hispanic origin of mother, 2005
Birthweight
Low birthweighta
Age and race and Hispanic origin of mother Number Percent Total Less than 500 grams 500999 grams 1,0001,499 grams 1,5001,999 grams 2,0002,499 grams 2,5002,999 grams 3,0003,499 grams 3,5003,999 grams 4,0004,499 grams 4,5004,999 grams 5,000 grams or more Not stated
Quantity zero.
a Less than 2,500 grams (5 lb 8 oz).
b includes races other than white and black and origin not stated.
c Race and Hispanic origin are reported separately on birth certificates. Persons of Hispanic origin may be of any race. Race categories are consistent with the 1977 Office of Management and Budget (OMB) standards. Nineteen states reported multiple-race data for 2005. Multiple-race data for these states were bridged to the single-race categories of the 1977 OMB standards for comparability with other states.
d Includes all persons of Hispanic origin of any race.
SOURCE: Joyce A. Martin et al., Table 35. Number and Percentage Low Birthweight and Number of Live Births by Birthweight, by Age and Race and Hispanic Origin of Mother: United States, 2005, in Births: Final Data for 2005, National Vital Statistics Reports, vol. 56, no. 6, December 5, 2007, http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_06.pdf (accessed February 2, 2008)
Hispanic d
All ages 67,796 6.9 985,505 1,212 4,586 5,988 12,710 43,300 176,438 399,295 266,338 64,704 9,167 1,174 593
Under 15 years 252 10.2 2,466 6 22 34 48 142 642 1,000 483 75 11
1519 years 10,980 8.0 136,906 177 752 908 1,950 7,193 30,356 59,319 30,279 5,246 570 50 106
15 years 714 9.9 7,241 17 53 73 118 453 1,714 3,072 1,499 223 14 1 4
16 years 1,453 9.1 15,928 17 136 125 275 900 3,705 6,895 3,257 540 63 5 10
17 years 2,154 8.0 26,877 29 136 168 401 1,420 6,133 11,744 5,741 988 80 12 25
18 years 3,045 8.0 38,090 60 210 249 515 2,011 8,373 16,618 8,443 1,425 140 14 32
19 years 3,614 7.4 48,770 54 217 293 641 2,409 10,431 20,990 11,339 2,070 273 18 35
2024 years 18,731 6.5 287,896 319 1,095 1,494 3,377 12,446 54,868 121,320 74,552 16,127 1,910 220 168
2529 years 16,305 6.1 266,590 291 1,133 1,365 3,060 10,456 44,209 107,357 76,211 19,248 2,770 330 160
3034 years 12,624 6.8 186,398 267 922 1,262 2,386 7,787 29,198 71,610 54,816 15,260 2,460 333 97
3539 years 6,967 8.1 85,739 121 521 719 1,464 4,142 13,733 31,697 24,717 7,194 1,185 199 47
4044 years 1,799 9.7 18,597 29 131 188 388 1,063 3,250 6,678 5,070 1,497 249 42 12
4554 years 138 15.1 913 2 10 18 37 71 182 314 210 57 12
TABLE 5.9
Low-birthweight live births, by mother's race, Hispanic origin, and smoking status, selected years, 19702004

[Data are based on birth certificates]
Birthweight, race and Hispanic origin of mother, and smoking status of mother 1970 1975 1980 1985 1990 1995 1999 2000 2002 2003 2004
Data not available.
a Excludes live births with unknown birthweight. Percent based on live births with known birthweight.
b Starting with 2003 data, estimates are not shown for Asian or Pacific Islander subgroups during the transition from single race to multiple race reporting.
c Prior to 1993, data from states lacking an Hispanic-origin item on the birth certificate were excluded. Data for non-Hispanic white and non-Hispanic black women for years prior to 1989 are not nationally representative and are provided for comparison with Hispanic data.
d Percent based on live births with known smoking status of mother and known birthweight. Data from states that did not require the reporting of mother's tobacco use during pregnancy on the birth certificate are not included. Reporting area for tobacco use increased from 43 states and the District of Columbia (DC) in 1989 to 49 states and DC in 20002002. Data for 2003 and 2004 exclude states that implemented the 2003 revision of the U.S. Standard Certificate of Live Birth: Pennsylvania and Washington (in 2003), Florida, Idaho, Kentucky, New Hampshire, New York state (excluding New York City), Pennsylvania, South Carolina, Tennessee, and Washington (in 2004). Tobacco use data based on the 2003 revision are not comparable with data based on the 1989 revision of the U.S. Standard Certificate of Live Birth. California has never required reporting of tobacco use during pregnancy.
Notes: The race groups, white, black, American Indian or Alaska Native, and Asian or Pacific Islander, include persons of Hispanic and non-Hispanic origin. Persons of Hispanic origin may be of any race. Starting with 2003 data, some states reported multiple-race data. The multiple-race data for these states were bridged to the single-race categories of the 1977 Office of Management and Budget standards for comparability with other states. Interpretation of trend data should take into consideration expansion of reporting areas and immigration. Data for additional years are available.
SOURCE: Table 13. Low-Birthweight Live Births, by Detailed Race, Hispanic Origin, and Smoking Status of Mother: United States, Selected Years 19702004, in Health, United States, 2007. With Chart book on Trends in the Health of Americans, Centers for Disease Control and Prevention, National Center for Health Statistics, November 2007, http://www.cdc.gov/nchs/data/hus/hus07.pdf (accessed January 30, 2008)
Low birthweight (less than 2,500 grams) Percent of live birthsa
All races 7.93 7.38 6.84 6.75 6.97 7.32 7.62 7.57 7.82 7.93 8.08
White 6.85 6.27 5.72 5.65 5.70 6.22 6.57 6.55 6.80 6.94 7.07
Black or African American 13.90 13.19 12.69 12.65 13.25 13.13 13.11 12.99 13.29 13.37 13.44
American Indian or Alaska Native 7.97 6.41 6.44 5.86 6.11 6.61 7.15 6.76 7.23 7.37 7.45
Asian or Pacific Islanderb 6.68 6.16 6.45 6.90 7.45 7.31 7.78 7.78 7.89
Chinese 6.67 5.29 5.21 4.98 4.69 5.29 5.19 5.10 5.52
Japanese 9.03 7.47 6.60 6.21 6.16 7.26 7.95 7.14 7.57
Filipino 10.02 8.08 7.40 6.95 7.30 7.83 8.30 8.46 8.61
Hawaiian 7.23 6.49 7.24 6.84 7.69 6.76 8.14
Other Asian or Pacific Islander 6.83 6.19 6.65 7.05 7.76 7.67 8.16
Hispanic or Latinoc 6.12 6.16 6.06 6.29 6.38 6.41 6.55 6.69 6.79
Mexican 5.62 5.77 5.55 5.81 5.94 6.01 6.16 6.28 6.44
Puerto Rican 8.95 8.69 8.99 9.41 9.30 9.30 9.68 10.01 9.82
Cuban 5.62 6.02 5.67 6.50 6.80 6.49 6.50 7.04 7.72
Central and South American 5.76 5.68 5.84 6.20 6.38 6.34 6.53 6.70 6.70
Other and unknown Hispanic or Latino 6.96 6.83 6.87 7.55 7.63 7.84 7.87 8.01 7.78
Not Hispanic or Latinoc
White 5.69 5.61 5.61 6.20 6.64 6.60 6.91 7.04 7.20
Black or African American 12.71 12.62 13.32 13.21 13.23 13.13 13.39 13.55 13.74
Cigarette smokerd 1 1.25 12.18 12.06 11.88 12.15 12.40 12.54
Nonsmokerd 6.14 6.79 7.21 7.19 7.48 7.66 7.79
Very low birthweight (less than 1,500 grams)
All races 1.17 1.16 1.15 1.21 1.27 1.35 1.45 1.43 1.46 1.45 1.48
White 0.95 0.92 0.90 0.94 0.95 1.06 1.15 1.14 1.17 1.17 1.20
Black or African American 2.40 2.40 2.48 2.71 2.92 2.97 3.14 3.07 3.13 3.07 3.07
American Indian or Alaska Native 0.98 0.95 0.92 1.01 1.01 1.10 1.26 1.16 1.28 1.30 1.28
Asian or Pacific Islanderb 0.92 0.85 0.87 0.91 1.08 1.05 1.12 1.09 1.14
Chinese 0.80 0.52 0.66 0.57 0.51 0.67 0.68 0.77 0.74
Japanese 1.48 0.89 0.94 0.84 0.73 0.87 0.86 0.75 0.97
Filipino 1.08 0.93 0.99 0.86 1.05 1.13 1.41 1.38 1.31
Hawaiian 1.05 1.03 0.97 0.94 1.41 1.39 1.55
Other Asian or Pacific Islander 0.96 0.91 0.92 0.91 1.09 1.04 1.17
Hispanic or Latinoc 0.98 1.01 1.03 1.11 1.14 1.14 1.17 1.16 1.20
Mexican 0.92 0.97 0.92 1.01 1.04 1.03 1.06 1.06 1.13
Puerto Rican 1.29 1.30 1.62 1.79 1.86 1.93 1.96 2.01 1.96
Cuban 1.02 1.18 1.20 1.19 1.49 1.21 1.15 1.37 1.30
Central and South American 0.99 1.01 1.05 1.13 1.15 1.20 1.20 1.17 1.19
Other and unknown Hispanic or Latino 1.01 0.96 1.09 1.28 1.32 1.42 1.44 1.28 1.27
Not Hispanic or Latinoc White 0.87 0.91 0.93 1.04 1.15 1.14 1.17 1.18 1.20
Black or African American 2.47 2.67 2.93 2.98 3.18 3.10 3.15 3.12 3.15
Cigarette smokerd 1.73 1.85 1.91 1.91 1.88 1.92 1.88
Nonsmokerd 1.18 1.31 1.43 1.40 1.45 1.44 1.47

had esophageal atresia, an obstruction in the esophagus that prevents the passage of food from the mouth to the stomach. Following their obstetrician's recommendation, the parents decided to forgo surgery to repair the baby's esophagus. The baby would be kept pain-free with medication and allowed to die.

TABLE 5.10
Percent of births with selected medical or health characteristics, by race, Hispanic origin, and birthplace of mother, 2005
Origin of mother
Hispanic Non-Hispanic
Characteristic All originsa Total Mexican Puerto Rican Cuban Central and South American Other and unknown Hispanic Totalb White Black
a Includes origin not stated.
b Includes races other than white and black.
c Excludes data for California, which did not report weight gain on the birth certificate.
d Births delivered by certified nurse midwives (CNM).
e Born prior to 32 completed weeks of gestation.
f Born prior to 37 completed weeks of gestation.
g Birthweight of less than 1,500 grams (3 lb 4 oz).
h Birthweight of less than 2,500 grams (5 lb 8 oz).
i Equivalent to 8 lb 14 oz.
j Live births in twin deliveries per 1,000 births.
k Live births in triplets and other higher order multiple deliveries per 100,000 live births.
SOURCE: Joyce A. Martin et al., Table 24. Percentage of Births with Selected Medical or Health Characteristics, by Hispanic Origin of Mother and by Race for Mothers of Non-Hispanic Origin: United States, 2005, in Births: Final Data for 2005, National Vital Statistics Reports, vol. 56, no. 6, December 5, 2007, http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_06.pdf (accessed February 2, 2008)
Notes: Race and Hispanic origin are reported separately on birth certificates. Race categories are consistent with the 1977 Office of Management and Budget (OMB) standards. Persons of Hispanic origin may be of any race. In this table Hispanic women are classified only by place of origin; non-Hispanic women are classified by race. Nineteen states reported multiple-race data for 2005. The multiple-race data for these states were bridged to the single-race categories of the 1977 OMB standards for comparability with other states.
All births Mother
Diabetes during pregancy 3.8 3.8 3.8 4.7 3.9 3.6 3.7 3.9 3.7 3.5
Weight gain of less than 16 lbsc 13.0 15.8 17.0 13.6 9.2 13.6 14.9 12.3 10.8 18.9
CNM deliveryd 7.4 8.3 8.0 10.2 4.2 9.5 8.4 7.1 7.1 6.9
Cesarean delivery 30.3 29.0 28.0 31.1 45.0 30.9 29.6 30.7 30.4 32.6
Infant
Gestational age
Very preterme 2.0 1.8 1.7 2.5 2.1 1.7 2.0 2.1 1.6 4.2
Pretermf 12.7 12.1 11.8 14.3 13.2 12.0 13.6 12.9 11.7 18.4
Birthweight
Very low birth weightg 1.5 1.2 1.1 1.9 1.5 1.2 1.4 1.6 1.2 3.3
Low birth weighth 8.2 6.9 6.5 9.9 7.6 6.8 8.3 8.6 7.3 14.0
4,000 grams or morei 8.1 7.6 8.0 6.1 8.0 7.3 6.1 8.3 9.6 4.4
Twin birthsj 32.2 22.0 20.3 31.1 32.2 23.4 26.1 35.3 36.1 36.4
Triplet or higher birthsk 161.8 77.2 64.1 124.7 180.5 100.5 92.4 187.7 217.8 105.5

Disagreeing with the parents' decision, the hospital took them to the county court. The judge ruled that the parents had the legal right to their decision, which was based on a valid medical recommendation. The Indiana Supreme Court refused to hear the appeal. Before the county prosecutor could present the case to the U.S. Supreme Court, the six-day-old baby died.

The public outcry following the death of Baby Doe (the infant's court-designated name) brought immediate reaction from the administration of President Ronald Reagan (19112004). The U.S. Department of Health and Human Services (HHS) informed all hospitals receiving federal funding that discrimination against handicapped newborns would violate section 504 of the Rehabilitation Act of 1973. This section (nondiscrimination under federal grants and programs) states: No otherwise qualified individual with a disability in the United States shall, solely by reason of her or his disability, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program, service or activity receiving Federal financial assistance.

Furthermore, all hospitals receiving federal aid were required to post signs that read: Discriminatory failure to feed and care for handicapped infants in this facility is prohibited by Federal law. The posters listed a toll-free hotline for anonymous reports of failure to comply.

Even though government investigators (called Baby Doe squads) were summoned to many hospitals to verify claims of mistreatment (the hotline had five hundred calls in its first three weeks alone), no violation of the law could be found. On the contrary, the investigators found doctors resuscitating babies who were beyond treatment because they feared legal actions. Finally, a group led by the American Academy of Pediatrics filed suit in March 1983 to have the Baby Doe rules overturned because they believed them to be harsh, unreasonably intrusive, and not necessarily in the best interests of the child. After various legal battles, in 1986 the U.S. Supreme Court ruled that the HHS did not have the authority to require such regulations and invalidated them.

Child Abuse Amendments of 1984 and Their Legacy

As the Baby Doe regulations were being fought in the courts, Congress enacted and President Reagan signed the Child Abuse Amendments of 1984 (CAA).

The CAA extended and improved the provisions of the Child Abuse Prevention and Treatment Act and the Child Abuse Prevention and Treatment and Adoption Reform Act of 1978. The CAA established that states' child protection services systems would respond to complaints of medical neglect of children, including instances of withholding medically indicated treatment from disabled infants with life-threatening conditions. It noted that parents were the ones to make medical decisions for their disabled infants based on the advice of their physicians. These laws have been amended many times over the years, most recently by the Keeping Children and Families Safe Act of 2003, without voiding the states' and parents' responsibilities to disabled infants.

Born-Alive Infants Protection Act of 2001

The Born-Alive Infants Protection Act of 2001 was signed by President George W. Bush (1946) in August 2002. The purpose of the law is to ensure that all infants born alive, whether developmentally able to survive long term, are given legal protection as people under federal law. The law neither prohibits nor requires medical care for newly born infants who are below a certain weight or developmental age.

David Boyle et al. of the American Academy of Pediatrics Neonatal Resuscitation Program (NRP) Steering Committee state in Born-Alive Infants Protection Act of 2001, Public Law No. 107-207 (Pediatrics, vol. 111, no. 3, 2003) that the law:

Should not in any way affect the approach that physicians currently follow with respect to the extremely premature infant. At the time of delivery, and regardless of the circumstances of the delivery, the medical condition and prognosis of the newly born infant should be assessed. At that point decisions about withholding or discontinuing medical treatment that is considered futile may be considered by the medical care providers in conjunction with the parents acting in the best interest of their child. Those newly born infants who are deemed appropriate to not resuscitate or to have medical support withdrawn should be treated with dignity and respect, and provided with comfort care measures.

MEDICAL DECISION MAKING FOR OLDER CHILDREN

Under U.S. law, children under the age of eighteen cannot provide legally binding consent regarding their health care. Parents or guardians legally provide that consent, and, in most situations, physicians and the courts give parents wide latitude in the medical decisions they make for their children.

Religious Beliefs and Medical Treatment

When a parent's decisions are not in the best interests of the child, the state may intervene. In Child Welfare versus Parental Autonomy: Medical Ethics, the Law, and Faith-Based Healing (Theoretical Medicine and Bioethics, vol. 25, no. 4, July 2004), Kenneth S. Hickey and Laurie Lyckholm explain that forty-six states exempt parents from child abuse and neglect laws if they rely on spiritual healing rather than on having their minor children receive medical treatment. The states without these laws are Hawaii, Massachusetts, Nebraska, and North Carolina. Confusing this issue, however, is the agreement of the courts that religious exemption laws are no defense against criminal neglect. The legal distinction between practicing one's religion and criminal conduct in the treatment of one's children remains unclear.

Adolescents

The United Nations defines adolescents as people between the ages of ten and nineteen. Early adolescence is from ten to fourteen years, whereas late adolescence is from fifteen to nineteen years.

David R. Freyer of Michigan State University indicates in Care of the Dying Adolescent: Special Considerations (Pediatrics, vol. 113, no. 2, February 2004) that over three thousand U.S. adolescents die each year from chronic illnesses such as cancer, heart disease, acquired immunodeficiency syndrome, and metabolic disorders. Even though many laws concerning minors have changed, such as allowing minors to seek medical treatment for reproductive health and birth control services without parental consent, most states have no laws for end-of-life decisions by minors who are adolescents.

Freyer notes that even though U.S. laws do not consider adolescents under the age of eighteen to be competent to make their own health-care decisions, health-care practitioners often do. A broad consensus has developed among pediatric health-care practitioners, developmental psychologists, ethicists, and lawyers that by the age of fourteen years terminally ill adolescents (unless they demonstrate otherwise) have the functional competence to make binding medical decisions for themselves, including decisions relating to the discontinuance of life-sustaining therapy and other end-of-life issues. According to Freyer, some experienced health-care practitioners think that terminally ill children as young as ten years often meet the criteria for having functional competence and should have substantial, if not decisive, input on major end-of-life care decisions, including the discontinuation of active therapy.

Cite this article
Pick a style below, and copy the text for your bibliography.

  • MLA
  • Chicago
  • APA

"Seriously Ill Children." Death and Dying: End-of-Life Controversies. . Encyclopedia.com. 17 Nov. 2018 <https://www.encyclopedia.com>.

"Seriously Ill Children." Death and Dying: End-of-Life Controversies. . Encyclopedia.com. (November 17, 2018). https://www.encyclopedia.com/caregiving/legal-and-political-magazines/seriously-ill-children

"Seriously Ill Children." Death and Dying: End-of-Life Controversies. . Retrieved November 17, 2018 from Encyclopedia.com: https://www.encyclopedia.com/caregiving/legal-and-political-magazines/seriously-ill-children

Learn more about citation styles

Citation styles

Encyclopedia.com gives you the ability to cite reference entries and articles according to common styles from the Modern Language Association (MLA), The Chicago Manual of Style, and the American Psychological Association (APA).

Within the “Cite this article” tool, pick a style to see how all available information looks when formatted according to that style. Then, copy and paste the text into your bibliography or works cited list.

Because each style has its own formatting nuances that evolve over time and not all information is available for every reference entry or article, Encyclopedia.com cannot guarantee each citation it generates. Therefore, it’s best to use Encyclopedia.com citations as a starting point before checking the style against your school or publication’s requirements and the most-recent information available at these sites:

Modern Language Association

http://www.mla.org/style

The Chicago Manual of Style

http://www.chicagomanualofstyle.org/tools_citationguide.html

American Psychological Association

http://apastyle.apa.org/

Notes:
  • Most online reference entries and articles do not have page numbers. Therefore, that information is unavailable for most Encyclopedia.com content. However, the date of retrieval is often important. Refer to each style’s convention regarding the best way to format page numbers and retrieval dates.
  • In addition to the MLA, Chicago, and APA styles, your school, university, publication, or institution may have its own requirements for citations. Therefore, be sure to refer to those guidelines when editing your bibliography or works cited list.