blindness, 43, 70, 71, 80, 81, 96, 97, 114–15
blood bank, 23, 158
blood pressure of premature infants, 19, 26, 54–56, 72, 74
blood test for premature infants, 26–27, 29, 31
blood transfusion for premature infants, 23, 31
Bobo, Mary and Fred, 120–21
Born-Alive Infants Protection Act (2002), 80, 84
Boston Children’s Hospital, 39–40, 42, 53, 57–58, 129–30, 131
Boston University, 85
Botox (botulinum toxin), 129
bottle feeding, 119–20, 126. See also feeding
brain: blood supply in, 30, 54; brain stem of, 53, 54, 69, 105; Broca’s area of, 61; cells in, 30; cerebellum of, 32, 52, 53, 54, 56–57, 58; cerebrospinal fluid in, 30, 53–55; connections among neurons in, 60; cortex of, 30, 53, 54, 69–70, 105–7, 126; dentate gyrus of, 69; germinal matrix of, 30, 54–55; gray matter of, 54; hemispheres of, 30; hippocampus of, 69; homunculus map of, 59, 61, 69, 105; locationism theory of, 61, 69; midbrain of, 69; motor cortex of, 60, 142, 145–47; neurons of, 30, 54, 55, 60–61, 69, 105–6; neurotrophic factors in, 60; prenatal development of, 53–55, 59; pyramidal tract of, 105; swelling of, 32; ventricles of, 30, 31–32, 53–55, 58; white matter of, 54, 60, 69, 107. See also neuroplasticity
brain injury. See intraventricular hemorrhage (IVH)
brain stem, 53, 54, 69, 105. See also brain
Brain That Changes Itself, The (Doidge), 61–62
Braxton Hicks, John, 7
Braxton Hicks contractions, 7, 9
breast milk, 157–59. See also feeding
breathing problems and lung diseases, 12, 22, 39, 42–44, 81, 87, 156–57
breathing tube, 15–16, 18, 19, 21, 45, 47, 49, 120
Brigham and Women’s Hospital: Epstein as director of NICU at, 43, 45–46; ethics committee of, 88–89; Labor and Delivery at, 7–13, 76–77; library of, 29–30; Neurology Department of, 35; Newborn Intensive Care Unit (NICU) of, 18–28, 44, 113, 155–60; prenatal care at, 4–6; Ringer as director of NICU at, 35–36, 46, 113–14, 155–60; Ringer’s office in, 51. See also newborn intensive care unit (NICU)
Broca, Paul, 61
Broca’s area, 61
Burks, Comelethaa, 83
Burks, Shemika, 83
Camp Ramapo, NY, 103–4
Carmel, Amanda, 68, 142–43
Carmel, David, 65–68, 93, 104, 143, 151
Carmel, Jason, 65–68, 103–5, 141–48, 151–53
Carmel, Jonathan, 66
car seats, 121
Case Western Reserve University, 36
cerebellar hemorrhage, 52, 56–57, 58, 59
cerebellum, 32, 52, 53, 54, 56–57, 58. See also brain
cerebral palsy: cause of, 107; in children born prematurely, 12, 22, 30, 32, 99; description of, 55; and Sarah Habib, 136–39; and IVH, 55, 56; and Sidney Miller, 80; and neuroplasticity, 126; and oxygen levels of ventilators, 44; and quality of life, 91, 92, 96, 98–99; research on, 108, 152–53; TMS (transcranial magnetic stimulation) for, 108, 152–53; and uncontrolled contraction of muscle, 129
cerebrospinal fluid, 30, 53–55. See also brain
cervix, 8–9, 11
cesarean section, 13–15, 48
chaplain, 20, 23
Children’s Hospital Boston, 39–40, 42, 53, 57–58, 129–30, 131
Children’s Hospital of Philadelphia, 39
chorioamnionitis, 80
CI. See Constraint-Induced (CI) Therapy
Ciarra (mother), 118–19
clothing for premature infants, 47, 49, 87, 122
cognitive impairment: and ALS, 91–92; of Camp Ramapo children, 103; and cerebral palsy, 136–38; of Sarah Habib, 136–39, 154–55; and IVH, 52, 56, 63, 125; and mental retardation, 12, 30, 80; and prematurity, 52, 56, 63, 102, 125; and quality of life, 96, 97–98; statistics on, 56, 63, 96, 125
Columbia University, 104–9
communication device, 137–38
compassion, 103–4
Constraint-Induced (CI) Therapy, 130–36, 149–50, 152–53
contractions during labor. See labor and delivery
Conway, Craig, 84
cortex, 30, 53, 54, 69–70, 105–7, 126. See also brain
corticospinal tract neurons, 66, 105–9, 129, 141–48, 152, 153. See also neurons
court cases on resuscitating premature infants, 81–84
craniosacral therapy, 137
C-section, 13–15, 48
cytokines, 56
death of premature infants: and gestational age generally, 11; from IVH, 56, 87; from lung disease, 42–43, 87; and mortality rates, 12, 38, 44, 56; in NICU, 20, 87; after withdrawing life-sustaining care, 73–76, 83
delivery. See labor and delivery
Delivoria-Papadopoulos, Maria, 39
DeLuca, Stephanie, 135, 136
denate gyrus, 69. See also brain
dendrite of neuron, 60
Deshane (premature infant), 118–19
digestion. See feeding
Doidge, Norman, 61–62
do-not-resuscitate (DNR) order, 72, 81, 86–87
Down syndrome, 75, 78
Duff, Raymond, 75–76
du Plessis, Adre, 62–63
Early Intervention Program (Newton, MA), 124, 128, 129
Eisenberg, Leon, 74
Elisa, Dr., 21–23, 47–48, 50–52, 93
Epstein, Michael, 43, 45–46, 113
ethics: and abortion, 76–78, 86; and American Academy of Pediatrics’ guidelines on resuscitation of premature infants, 83, 84; and Baby Doe rules, 78–82, 84; and Born-Alive Infants Protection Act (2002), 80, 84; court cases on resuscitating premature infants, 81–84; and decision to withdraw life-sustaining care of premature infants, 73–76, 78–87; and DNR (do-not-resuscitate) order, 72, 81, 86–87; and God squads, 79–80; and hospital ethics committee, 88–89; and Sidney Miller case, 80–82; parental agreement or disagreement with physicians’ recommendations for resuscitation or withdrawing treatment from premature infants, 74–76, 78–87; resuscitation decisions based on gestational age, 85; and resuscitation of premature infants, 81–87
facilitation, 107
Fairfax Hospital (Virginia), 82
feeding: bottle feeding, 119–20, 126; breast milk for, 157–59; and digestion, 40; intravenous nutrition for premature infants, 19, 26, 40–41, 48; of patients with ALS, 91, 92; of premature infants, 19, 26, 38, 40–41, 48, 73; total parenteral nutrition (TPN), 41, 89; tube feeding for child with cerebral palsy, 137; tube feeding of premature infants, 38, 40, 73, 120
Friel, Kathleen, 152–53
Fujiwara, Tetsuro, 43
gastroschisis, 41
GeneChips, 67–68
George Washington University, 133
germinal matrix, 30, 54–55. See also brain
God squads, 79–80
good life. See quality of life
Gordon, Andy, 152–53
Grace. See Peterson, Grace
gray matter, 54. See also brain
Habib, Kim and David, 71–72, 137–39, 154–55
Habib, Sarah, 71–72, 136–39, 154–55
Hannah. See Wolfberg, Hannah
happiness, 94, 101. See also quality of life
Harrison, Gabi, 111–12, 116
Harvard Joint Program in Neonatology, 38, 44–46, 113
Harvard Medical School, 36, 38
health, definition of, 94
health-care proxy, 92
health-related quality of life, 94–102
heart disease, 75
heart rate: of fetus, 7–8, 12–13; and midb
rain, 53; of premature infants, 19, 112, 116, 120
heat lamp, 18–19
hematocrit, 26–27, 31
hemorrhage. See cerebellar hemorrhage; intraventricular hemorrhage (IVH)
hippocampus, 69. See also brain
HIV/AIDS, 158, 159
holding. See touching and holding
homunculus, 59, 61, 69, 105
Hospital Corporation of America, 81–82
Hospital for Sick Children (Toronto), 39
Hubel, David, 71, 107
hydrocephalus, 80
hyperbaric oxygen chamber, 40
hypertonicity, 129–30
hysterectomies, 127
ICU. See newborn intensive care unit (NICU)
incubators: history of, 38, 43–44; humidified incubators, 41–42; for premature infants, 16, 18, 20, 28, 38, 41–44, 47, 73, 87–88, 112; touching and holding premature infant inside of, 22–23, 25, 28, 47, 49, 88, 120; touching and holding premature infants outside of, 112, 116–19
Indiana Supreme Court, 78
infants. See premature infants
infections: antibiotics for treatment and prevention of, in premature infants, 18, 26, 47, 48, 73; as cause of preterm labor, 8, 22, 80, 81, 87; and cytokines, 56; and IVH, 56; and kangaroo care, 117; in premature infants generally, 22, 44, 52, 87; protection of Larissa from, after her return home, 127; protocols for reduction of, 114, 155–56; reduction of catheter-line infections, 155–56; and substitute nutrition, 41; test for, 26
intelligence. See cognitive impairment
intensive care unit. See newborn intensive care unit (NICU)
intestines: digestion by, 40; injury of, 12; malformation of, 75; surgery on, 41
intravenous nutrition for premature infants, 19, 26, 40–41, 48
intraventricular hemorrhage (IVH): in adults, 33, 59; and cerebellar hemorrhage, 52, 56–57, 58, 59; cognitive impairment following, 54, 56, 63; deaths of premature infants from, 56, 87; decisions regarding, for Larissa, 33, 47–48, 50–52; description of, 30–31, 55–56; Sarah Habib diagnosed with, 71–72; Larissa diagnosed with, 29–33, 47, 48, 52–63; Sidney Miller diagnosed with, 81–82; MRI study of, 52–53, 57–58, 59; neurologists’ evaluation of, 58–59, 62–63, 92, 93, 125; and neuroplasticity, 32–33, 59–62, 125–26; prognosis for infants with, 22, 29–30, 33, 52, 56–57, 62–63, 73, 89, 92, 93, 101–2, 125; research on, 29–30, 88; severity of, 55–56; ultrasound for diagnosis of, 29, 31–33, 55–56; ultrasound for tracking progress of, 33, 50
intubation of premature infants, 15–16
IVH. See intraventricular hemorrhage (IVH)
Jacobs, Mark, 80–81
James, William, 69
Jumpstart, 104
Kaempf, Joe, 85–86
kangaroo care, 116–18. See also touching and holding
Keene, Stephanie, 82–83
Kelley, Donald, 80–81
Kennedy, Patrick Bouvier, 39–40
Koop, C. Everett, 39, 79
labor and delivery: attempts to stop preterm labor, 8, 9, 11; Braxton Hicks contractions distinguished from, 7, 9; causes of premature labor, 8, 22; and cervix, 8–9, 11; cesarean section, 13–15; contractions during, 6–13; emotions of parents during preterm labor, 9–13; epidural for, 11; hormonal signals triggering, 8; monitors for fetal heart rate and contractions during, 7–8, 11, 12–13; nursing procedures during preterm labor, 9–10; obstetrician during, 11, 13–14; steroid injections for women in preterm labor, 9, 42, 76, 86
Larissa. See Wolfberg, Larissa
laryngoscope, 16
learned nonuse, 132–35
learning, 60–61, 107–9, 145–46
learning disabilities, 11
legal issues on resuscitating premature infants, 81–84
life quality. See quality of life
locationism theory, 61, 69
Lou Gehrig’s disease, 91–93
low blood count, in premature infants, 26–28, 29, 31
Lowery, Karen, 24, 31
Lowery, Kelly: in Birmingham, AL, 130–32, 135–36, 149–50; and bottle feeding of Larissa, 120, 126; and bringing Larissa home, 122; cesarean section for, 13–15, 17; concerns about pregnancy of, 5–6; daughters’ hospital visits to, 31, 48–50; and decision on hope for Larissa’s future, 102; dissertation by, 151; emotions of, during early weeks of Larissa’s life, 25, 33, 89; emotions of, during labor, 9–13; and ethics committee meeting on Larissa, 88–89; and gains of function by Larissa, 123–24, 126–29, 136, 161–62; at Hannah’s nursery school, 2–4; and holding Larissa in her arms, 112; and kangaroo care for Larissa, 116–18; and labor before birth of Larissa, 6–13; and Larissa’s bike riding, 161–62; pain of, following C-section, 17, 48, 89; in postpartum room, 23; prenatal care of, 4–6; psychology internship for, 4–5, 111; in restaurant with Larissa, 127–28; tiredness of, during Larissa’s first months at home, 126–27; visits to Larissa in NICU by, 24–25, 28, 47–50, 111–13, 116–22
Lowery, Larissa. See Wolfberg, Larissa
lung diseases and breathing problems, 12, 22, 39, 42–44, 81, 87, 156–57
Lutenbacher, Reggi, 131–32, 135–36, 149–50
Lynch, Susan, 124, 128
magnetic resonance imaging. See MRI (magnetic resonance imaging)
Marine Biological Laboratory (Cape Cod), 37
Martin, Jack, 105–9, 141–43, 147–48, 152
McMaster University (Ontario), 94
mental retardation, 12, 30, 80
Merzenich, Michael, 70
midbrain, 69. See also brain
milk banks, 158–59
Miller, Karla and Mark, 80–82, 86, 87
Miller, Sidney, 80–82, 87
moral and ethical dilemmas. See ethics
mortality rate of premature infants, 12, 44. See also death of premature infants
motor cortex, 60, 142, 145–47. See also brain
MRI (magnetic resonance imaging): of IVH, 52–53, 57–58, 59; and location and extent of brain injury for children with cerebral palsy, 152, 153; and TMS (transcranial magnetic stimulation), 152–53
National Institutes of Health (NIH), 133, 134
necrotizing enterocolitis (NEC), 157
neonatology and neonatologists: and assessment of Larissa’s condition during her second day of life, 26–29; and decision to withdraw life-sustaining care of premature infants, 73–76, 78–87; and development of incubators, 38, 41–44; and feeding of premature infants, 38, 40–41, 73; history of, 38–44, 39–40, 44–45; and intubation of premature infant, 15–16; and protocols for NICU, 113–15, 155–56; and resuscitation of premature infants, 81–87; and steroid injections for women in preterm labor, 9, 42, 76, 86; and ultrasound for diagnosis of IVH, 29, 31–33
neural tube, 53
neurologists’ evaluation of IVH, 58–59, 62–63, 92, 93, 125
neurons: action potentials of, 60; competition among, in forming connections, 106–9; connections among, in brain, 60, 69, 106–9; corticospinal tract neurons, 66, 105–9, 129, 141–48, 152, 153; and germinal matrix, 55; and gray matter, 54; injury to, 30; insulating cells for protection of, 30, 54; Martin’s and Carmel’s research on development of same-side neurons for control of parts of abandoned side of body, 107–8, 141–48; and neurotransmitters, 60–61, 107; regeneration of injured neurons, 67–68; structure of, 60; synapses of, 60, 105, 142; and white matter, 54, 107. See also neuroplasticity
neuroplasticity: in adults, 61–62; animal research on, 61, 132–34, 146–48; Carmel’s research on, 141–48; and cerebral palsy, 126; and Constraint-Induced (CI) Therapy, 130–36, 152–53; definition of, 32–33, 69; and homunculus map, 59, 61, 69, 105; and IVH, 32–33, 59–62, 125–26; James’s theory of, 69; in newborns, 32–33, 59, 62–63; and
positive reinforcement, 70; products and services for leveraging, 124–25; and repetition, 136; research on, 61, 69–71, 132–35, 141–48; Taub’s research on, 132–35; and TMS (transcranial magnetic stimulation), 108, 152–53
neurotransmitters, 60–61, 107
neurotrophic factors, 60
newborn intensive care unit (NICU): and Baby Doe rules, 78–82, 84; decisions on withdrawal of life-sustaining care for premature infants in, 73–76, 78–87; description of, 20, 25; elegant care in, 155–60; kangaroo care in, 116–18; Larissa’s release from, 122; length of time spent by Larissa in, 122; moral and ethical dilemmas in, 73–89; mother-son interaction in, 20; new-arrival section of, 18–20; paperwork in, 156; protocols for, 113–15, 155–56; recommended best practices for, 156–57; Ringer on elegant care in, 155–60; rounds by medical team in, 111; visits to daughter Larissa in, 20–25, 28, 47–50, 111–13, 116–22. See also incubators; neonatology and neonatologists; nurses; premature infants; Ringer, Steve; Van Marter, Linda; ventilators
New England Journal of Medicine, 75
NICU. See newborn intensive care unit (NICU)
NIH. See National Institutes of Health (NIH)
Northwestern University, 73
nurses: and abortion decision by mother, 77; on family’s cavalier attitude in NICU, 120–21; and kangaroo care, 116–18; in NICU, 18–21, 24–26, 28, 44–46, 49–50, 77, 111–12, 114, 116–21; perceptions by, of quality of life of disabled children, 100; and protocols for NICU, 114, 155; sign-out by, 118
obstetricians, 11, 13–14, 17
occupational therapy, 129–32, 135–37, 149–51
ophthalmology, 114–15, 121–22
Otero, Eduardo, 81
oxygen requirements. See ventilator
Pacheco, Alex, 133–34
parents: agreement or disagreement between physicians and, on resuscitation or withdrawal of treatment from premature infants, 74–76, 78–87; decisions by, affecting future quality of life of premature infant, 92–93; and do-not-resuscitate (DNR) order, 72, 81, 86–87; emotions of, during early weeks of premature infant’s life, 23, 25, 29, 33, 46, 89; emotions of, during preterm labor, 9–13; hopes of, for their children, 93, 161–62; perceptions of, on quality of life for children born prematurely, 95–101; quality of life of parents of disabled children, 98–99; visits to NICU by, 20–25, 28, 47–50, 111–13, 116–22. See also Lowery, Kelly; Wolfberg, Adam