Fragile Beginnings
Page 20
Parkinson’s disease, 104
Partridge, John Colin, 73–74
pediatricians. See neonatology and neonatologists
Penfield, Wilder, 69
People for the Ethical Treatment of Animals (PETA), 133–34
Perkins School for the Blind, 114–15, 122
PETA (People for the Ethical Treatment of Animals), 133–34
Peterson, Grace: bike riding by, 160; birth of, 10; and birth of Larissa, 23–24; in elementary school, 3, 23, 111, 117, 126; first visit to NICU by, 48–50; hospital visits by, 31, 48–50; in restaurant with Larissa, 128
Philadelphia Children’s Hospital, 39
placenta, 14, 15
plasticity, 69. See also neuroplasticity
pneumothorax, 114
premature infants: anemia of, 26–27; antibiotics for, 18, 26, 47, 48, 73; Baby Doe rules on, 78–82, 84; birth of, through cesarean section, 13–15; bleeding in, 27–28; blood pressure of, 19, 26, 54–55, 56, 72, 74; blue lights for, 118–19; body temperature of, 18–19, 41–42; breathing problems of, 12, 22, 39, 42–44, 81, 87, 156–57; breathing tube for, 15–16, 18, 19, 21, 45, 47, 49; car seats for, 121; clothing for, 47, 49, 87, 122; complications related to prematurity, based on gestational age, 11–12, 22, 29–30, 32, 80–81, 83–84, 99; critical hours following birth of, 17–33; decision by parents and physicians to stop treatment for, 73–76, 78–87; definition of, 10; DNR (do-not-resuscitate) order for, 72, 81, 86–87; follow-up clinic for, 121; gains of function by children born prematurely, 123–39, 160–62; heart rate of, 19, 112, 116; heat lamp for, 18–19; infections in, 18, 22, 26, 47, 56, 73, 80, 87, 114, 117; intravenous nutrition for, 19, 26, 40–41, 48; intubation of, 15–16; IVs, tubes, and monitors for, 15–16, 19–20, 21, 47, 120; low blood count of, 26–27, 29, 31; necrotizing enterocolitis (NEC) in, 157; resuscitation of, 81–87; retinopathy of prematurity in, 43, 115; routine procedures for, 26; statistics on, 10, 38, 44, 83–84; survival rate of, 12, 38, 44; swallowing by, 40; transfusion for, 23, 31; umbilical arteries and veins of, 19. See also death of premature infants; feeding; incubators; intraventricular hemorrhage (IVH); moral and ethical dilemmas; neonatology and neonatologists; newborn intensive care unit (NICU); touching and holding; ventilators; Wolfberg, Larissa
preterm labor. See labor and delivery
Principles of Psychology, The (James), 69
Providence St. Vincent Medical Center (Portland, OR), 85–86
pulmonary edema, 42, 43
pyramidal tract, 105
quality of life: and ALS (amyotrophic lateral sclerosis), 91–93; of cognitively impaired, 96, 97–98; and decision by parents and physicians to stop treatment for premature infants, 75–76; of disabled children and adolescents born prematurely, 94–98, 100; empathy for another’s quality of life, 93; and happiness, 94, 101; health-care providers’ perception of, regarding disabled children, 100; health-related quality of life, 94–102; parental decisions regarding future quality of life of premature infant, 92–93; of parents of disabled children, 98–99; parents’ perceptions of, for children born prematurely, 95–101; research on, 94–102; and resilience, 99–100; self-evaluation of, 92–93; standard gamble technique in research on, 94–96
Reagan, Ronald, 79
Reeve, Christopher, 143
Reiki, 137
research: on cerebral palsy, 108, 152–53; on IVH, 29–30, 88; 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; on neuroplasticity, 61, 69–71, 132–35, 141–48; on quality of life, 94–102; Ringer’s laboratory research, 36–38, 44–46. See also animal experiments
resilience, 99–100
respiratory distress syndrome, 39, 73
respiratory problems. See breathing problems and lung diseases
respiratory therapist, 18, 19
resuscitation of premature infants, 81–87
retinopathy of prematurity (ROP), 43, 115. See also blindness
Rey, Edgar, 116–17
Ringer, Ellie, 36, 38
Ringer, Steve: clinical abilities of, with premature infants and their parents, 45, 46; and delivery of premature infant, 35–36; as director of NICU at Brigham and Women’s Hospital, 35–36, 46, 113–14, 155–60; education of, 36; on elegant care in NICU, 155–60; and ethics committee meeting on Larissa, 88–89; father of, 36; in Harvard Joint Program in Neonatology, 38, 44–46; on kangaroo care, 118; laboratory research by, 36–38, 44–46; and Larissa’s IVH, 51–52, 56; on Larissa’s progress in NICU, 87–88, 93, 102; and leadership team for NICU, 158–59; medical residency of, 36–37; and milk bank for NICU, 158–59; office of, 51; personality of, 159; and protocols for NICU, 113–15, 155–56; on risks associated with prematurity, 83–84, 86; and sign-out by nurses, 118
Roe v. Wade, 78
ROP. See retinopathy of prematurity (ROP)
Rutgers University, 67–68
Saigal, Saroj, 94–97, 99–101
San Juan de Dios Hospital (Bogotá, Colombia), 116–17
seizures, 30, 80
sign language, 125, 155
Spaceballs software, 108, 148
Speck, Bill, 37, 159–60
speech difficulties, 136–39
spina bifida, 75
spinal cord injury, 65–68, 104–5, 141–48, 151
Steele, Tina, 158–59
steroid injections for women in preterm labor, 9, 42, 76, 86
St. Joseph’s Hospital (Milwaukee), 83
stroke, 59, 61–62, 104, 133, 134–35, 142
surface tension in lungs, 42–43
surfactant, 19, 43, 155, 156, 159, 160
survival rate of premature infants, 12, 38, 44
swallowing by premature infants, 40
synapses of neurons, 60, 105, 142
Taub, Edward, 132–35
tendon-release surgery, 129
Texas Court of Appeals, 81–82
TMS (transcranial magnetic stimulation), 108, 152–53
Toronto Hospital for Sick Children, 39
total parenteral nutrition (TPN), 41, 89
touching and holding: and kangaroo care, 116–18; of premature infant inside of incubator, 22–23, 25, 28, 47, 49, 88, 120; of premature infant outside of incubator, 112, 116–19
tracheoesophageal fistula, 78
tracheostomy, 91
transcranial magnetic stimulation (TMS), 108, 152–53
transfusion for premature infants, 23, 31
tube feeding. See feeding
Tufts Medical Center (Boston), 71–72
ultrasound: for diagnosis of IVH, 29, 31–33, 55–56; of fetal heart rate, 7–8, 12–13; of fetus, 5–6, 31; for tracking progress of IVH, 33, 50
umbilical cord, 15, 19
University of Alabama at Birmingham, 130–32, 134–36, 149–50
University of California at San Francisco, 73
University of Houston Health Law and Policy Institute, 84
U.S. Department of Health and Human Services, 79
U.S. Supreme Court, 78, 79
Van Marter, Linda: and decisions concerning Larissa’s IVH, 33, 48; intubation of Larissa by, 15–16; on Larissa’s condition during her second day of life, 26–29; and ultrasound for diagnosis of IVH, 29, 31–33
ventilators: cerebral palsy and oxygen levels of, 44; history of, 39; pneumothorax caused by, 114; for premature infants, 19, 20, 25, 26, 28, 47, 48, 71–72; protocols for, 114, 115; protocols needed for, 44; recommended level of oxygen supplementation with, 156; for respiratory distress syndrome, 75; retinopathy of prematurity and oxygen levels of, 43, 115
Vermont Oxford Network, 156–57, 160
vertigo, 70
vestibular system, 70
vision impairments. See blindness; retinopathy of prematurity
Wall, Stephen, 73–74
wet nurses, 158
white matter, 54, 60, 69, 107. See also brain
Wiesel, Torsten, 71, 107
Wisconsin Supreme Court, 83
withdrawal of life-sustaining care, 73–76, 78–87
Wolfberg, Adam: in Birmingham, AL, 130–32, 135–36, 149–50; and bringing Larissa home, 122; and concerns about Kelly’s pregnancy, 5–6; and decision based on hope for Larissa’s future, 102; and decisions concerning Larissa’s IVH, 33, 47–48, 50–52; emotions of, during early weeks of Larissa’s life, 23, 25, 29, 33, 46, 89; emotions of, during Kelly’s labor, 9–13; and ethics committee meeting on Larissa, 88–89; holding Larissa by, 88, 112, 117; and Kelly’s labor before birth of Larissa, 6–13; and Larissa’s bike riding, 160–62; library research by, on IVH, 29–30, 88; medical residency of, at Brigham and Women’s Hospital, 4, 126, 127; and MRI study of Larissa’s IVH, 57–58; paternity leave for, 111; in restaurant with Larissa, 127–28; visits to Larissa in NICU by, 20–25, 28, 47–50, 111–13
Wolfberg, Elias, 94
Wolfberg, Hannah: birth of, 10; and birth of Larissa, 23; in elementary school, 151; first visit to NICU by, 48–50; hospital visits by, 31, 48–50; and learning to walk, 125; in nursery school, 2–4, 111, 117, 126; in restaurant with Larissa, 128
Wolfberg, Larissa: adoption rejected as option for, 89, 98; assessment of, during her second day of life, 26–29; bathing of, 119; bike riding by, 160–62; birth of, 13–15; bottle feeding of, 119–20, 126; breathing tube for, 15–16, 18, 19, 21, 45, 47, 49; clothing for, 47, 49, 87, 122; cognitive functioning of, 151; Constraint-Induced Therapy for right hand of, 130–32, 135–36, 149–50; crawling by, 128; critical hours following birth of, in NICU, 17–33; difficulties of, in childhood, 151, 160–62; Dr. Elisa on, after Larissa’s birth, 21–23; and Early Intervention Program, 129; in elementary school, 151; gains of function by, 123–36, 160–62; hospital ethics committee meeting on, 89; hypertonicity of right leg of, and brace for, 129–30; in incubator, 16, 18, 28, 47, 73, 87–88, 112; intubation of, after birth, 15–16; and IVH, 29–33, 47, 48, 52–63; kangaroo care for, 116–18; labor before birth of, 6–13; length of time spent in NICU by, 122; and loss of blood during C-section, 14, 31; and MRI study of IVH, 52–53, 57–58, 59; neurologists’ evaluation of IVH in, 58–59, 62–63, 92, 93, 125; occupational therapy for, 129–32, 135–36, 149–51; parents’ hope for future of, 102, 161–62; personality of, 151, 162; prenatal care before birth of, 4–6; prenatal ultrasound of, 6; prognosis for, 33, 62–63, 73, 89, 92, 93, 101–2, 125; progress of, in NICU, 88, 101–2, 112, 116–22; release of, from NICU, 122; in restaurant, 127–28; rolling over by, 124; sisters’ visit to, in NICU, 47–50; size of, after birth, 21; touching and holding of, 22–23, 25, 28, 47, 49, 88, 112, 116–18; transfusion for, 31; typing skills for, 150; ultrasounds of head of, 29–33, 50, 55–56; visits by parents to NICU, 20–25, 28, 47–50, 111–13, 116–22
Woman’s Hospital of Texas, 80–82
World Health Organization, 94
Yale NICU, 75
Young, Wise, 67–68
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Library of Congress Cataloging-in-Publication Data
Wolfberg, Adam.
Fragile beginnings : discoveries and triumphs in the newborn ICU / Adam Wolfberg.
p. cm. — (A Harvard health publications book)
Includes bibliographical references and index.
ISBN 978-0-8070-1160-7 (hardback)
E-ISBN: 978-0-8070-9551-5
1. Neonatal intensive care—Popular works. 2. Medical ethics—Popular works. I. Title.
RJ253.5.W65 2012
618.92’01—dc23 2011027177