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Resources for Parents of Preemies
Q & A for Parents 10 questions to ask after my child’s premature birth?Here are ten basic questions parents should ask their neonatologists when their preemie is admitted to the NICU. (Questions suggested by Dr. D. Derleth and Preemie-L, the website and E-mail support group for parents of preemies.) 1. What are my baby’s chances for survival, of facing various degrees of handicap, and of having long-term health problems? 2. What medical problems are affecting my baby now? 3. How can I get more information about my baby’s problems? 4. How are those problems being treated? 5. What side effects could those treatments have? 6. Are there reasonable alternative treatments we could consider? 7. How can I get more involved in my baby’s care? 8. What can I do to best nurture my baby? 9. How do I find emotional or spiritual support? 10. Can the NICU’s social worker help me with transportation, local housing, financial aid, or other practical problems while my baby is in the newborn ICU? Common ailments in the NICUApnea — Pauses in breathing of twenty seconds or longer, or any length of time if accompanied by cyanosis or bradycardia. Monitors in the NICU measure the respiration rate and sound alarms during spells of apnea. Infants with chronic cases may be discharged home with apnea monitors. Asphyxia — Lack of oxygen in the blood and body, with an accumulation of carbon dioxide and acid in the blood stream. If prolonged, causes brain damage, organ damage and death. Atelectasis — The collapse of pockets of air sacs (alveoli) in the lungs. Interferes with the ability of the lungs to oxygenate the blood. Atrial septal defect — A defect in the heart in which a hole passing through the septum (a wall of tissue) that separates the two atria — the upper chambers of the heart.
Bradycardia — A significant slowing of the heart below the normal minimum rate for newborns of one hundred beats per minute. Bronchopulmonary dysplasia (BPD) — A scarring of the lung tissue most often caused by prolonged use of mechanical ventilators. Cerebral Palsy — A condition in which movement and posture is abnormal because of brain damage before, during or after birth. Can be associated with oxygen deprivation, though the cause is often unknown. Cleft palate — A birth defect that causes an opening in the roof of the mouth, connecting the oral and nasal cavities. Coarctation of the aorta — A defect in which the main artery from the heart to the body (the aorta) is narrowed. Cytomegalovirus (CMV) — A common virus that often attacks those with poor immune systems, such as AIDS patients and preemies. Desaturation (desats) — Term for too little oxygen in the bloodstream. Treated with higher percentages of oxygen via nasal canula or mechanical ventilation. Down Syndrome — Also called Trisomy 21, a birth defect that is manifested by an extra 21st chromosome, and is associated with impaired development and a variety of physical symptoms. Edema — Accumulation of fluid in the body, marked by visibly swelling. Usually a symptom of other ailments. Gastroenteritis — Inflammation of the bowel, often due to infection. Gastroschisis —A birth defect in which an opening in the abdominal wall causes the bowel and, sometimes, other abdominal organs such as the stomach, liver and pancreas, to form outside a fetus’s body in utero. The amniotic fluid can cause severe damage to the organs; multiple “reduction” surgeries are required to insert the organs into the body. Hydrocephalus — Commonly known as water on the brain, this condition is marked by the body’s inability to purge cerebrospinal fluid, which builds up in the ventricles of the brain. The resulting pressure can cause dramatic enlargement of the head and damage to the brain, and must be corrected with a surgically placed shunt to drain the fluid. It is generally a lifelong condition. Hypoplastic left heart syndrome — A heart defect, fatal if untreated, in which the aorta and left atrium and ventricle are too small, and the heart valve is narrowed or missing. Can be treated (though not fully corrected) with a series of reconstructive surgeries called the Norwood Procedure, or with heart transplant surgery. Hypoplastic lung — A defect in which one or both lungs are abnormally small. Intraventricular hemorrhage (IVH) — Bleeding in the brain from fragile, immature blood vessels into the ventricles (small central open spaces) of the brain, damaging surrounding tissue and sometimes creating scars, calcification and cysts. Commonly called "a bleed" in the NICU. The severity of the IVH is measured in Grades I through IV, with IV being the most severe and the most likely to produce serious immediate and long-term consequences associated with brain damage (cerebral palsy, vision and hearing loss, developmental delays, etc.). Less severe bleeds are more common and often leave no lasting damage. Extremely premature babies are most prone to IVH; about 60 percent of babies born under 1,000 grams will have bleeds. Severe bleeds can lead to hydrocephalus. The four grades of bleed are:
Jaundice — Buildup of the waste product bilirubin in the body’s fatty tissues, causing yellow skin color. Common in preemies, due to their immature liver function, which filters bilirubin from the blood, and in babies who were bruised during delivery. Treated by bathing the infant with bright lights called "bili lights," a process called phototherapy. Meconium aspiration — Meconium is the dark fecal matter that forms in unborn babies’ bowels. When stressed in utero by a medical condition or a difficult birth, the unborn child can pass meconium into the amniotic fluid. The obstetrician and neonatologist will use suction in such cases to try to prevent the baby from inhaling (aspirating) the substance. Inside the lungs, meconium can cause severe breathing problems and lung damage. Necrotizing enterocolitis — A serious inflammation of the bowels that can lead to numerous complications. Generally treated by intravenous feeding and medication, though surgery is required in severe cases. Omphalocele — Similar to gastroschisis, with bowel and other organs forming outside the body during embryonic development. This condition is distinctive in that the opening in the abdominal wall is just below the belly button. Patent ductus arteriosus (PDA) — The unborn child has a blood vessel called the ductus arteriosus, which takes blood from the heart and bypasses the idle lungs. In healthy full-term babies, the vessel closes shortly after birth. But in preemies and some other sick newborns, the ductus remains open (or, in Latin, patent). Once a baby is born and the lungs begin to work, the PDA floods the lungs with too much blood, which can cause respiratory problems and other ailments. In otherwise healthy preemies, PDAs can close spontaneously. Sicker and smaller babies require drug treatment to help the body close the PDA, and some require surgery called a PDA ligation, in which the ductus is tied off by the surgeon. Periventricular leukomalacia (PVL) — Cysts and areas of calcification in the brain, often the result of intraventricular hemorrhage. Persistent pulmonary hypertension of the newborn (PPHN) — A serious lung ailment in which high blood pressure in the arteries supplying blood to the lungs decreases the amount of oxygen to the rest of the body. Treatment may include high-frequency ventilation, a variety of drug therapies, nitric oxide therapy or, in severe cases that do not respond to other treatments, extracorporeal membrane oxygenation, a radical procedure in which the infant is placed on a modified heart-lung machine for a long period of time. Pulmonary atresia — A heart defect in which the valve that sends blood from the right ventricle to the lungs is missing. Pulmonary edema — The accumulation of fluid in lung tissues; impairs breathing. Pulmonary interstitial emphysema (PIE) — Leakage of air from damaged air sacs in the lungs (alveoli) into surrounding lung tissue. Reflux — Backflow of stomach contents into the esophagus. Respiratory Distress Syndrome (RDS) — Impaired lung function in newborns, particularly preemies, in whom the condition is usually linked to insufficient surfactant in the lungs. Retinopathy of Prematurity (ROP) — An eye disease that affects the retinas of premature babies, causing irregular blood vessel growth and scarring that, in severe cases, can lead to severe vision impairment or blindness. Regular exams by ophthalmologists in the NICU are standard for preemies in order to detect and treat ROP. Sepsis — A general infection. Babies are often admitted to the NICU with a "rule-out sepsis" diagnosis, meaning tests will be done to either rule out or confirm the existence of disease-causing microorganisms in the baby’s body. Small for gestational age (SGA) — The term used for a newborn whose weight and size falls below the tenth percentile for the baby’s particular gestational age. Preemies and full-term newborns can be SGA. (The term for a normally sized baby is AGA, or appropriate for gestational age). Spina bifida — A birth defect in which the spinal column does not close completely and protrudes through an opening at the base of the spine. One manifestation of this is called myelomenigocele. Tachycardia — A faster-than-normal heart rate. Tachypnea — A faster-than-normal breathing rate. Tetralogy of Fallot — A cluster of four heart defects that include a ventricular septal defect, misplacement of the origin of the aorta, narrowing of the pulmonary artery, and enlargement of the right ventricle. Thrombocytopenia — A condition in which the platelets in the blood, which aid in clotting, are too few in number.
Who works in the NICU?The staff of the NICU is made up principally of the neonatologists, neonatal nurses and respiratory therapists who provide daily hands-on care, with frequent visits from specialists from many other hospital departments. Patients and families in the NICU will likely encounter many of the following: attending physician — The neonatologist who assumes primary responsibility for an infant’s medical care. In the Miller Children’s NICU depicted in BABY E.R., the NICU is run by six attending physicians, each of whom assumes responsibility for a different room full of patients in the unit, on a weekly rotation. audiologist — A person trained in the assessment of hearing and hearing loss and able to determine the cause and degree of loss. The Audiologist is not a physician. case manager — A hospital employee and patient advocate who monitors the course of a baby’s stay in the NICU, assisting families with insurance claims, HMO approvals, transfers to other facilities and discharge plans. chaplain — A pastor, priest, minister, nun or rabbi who is available to families to help provide spiritual assistance. echocardiogram technician (heart ultrasound) — A technician skilled in taking and interpreting ultrasound images of the heart. home health nurse — Nurses with neonatal experience who visit the homes of patients after discharge to assess their development and health, and to make sure any needed medications and treatments are being used properly and effectively. intern — A physician in the first year of training following graduation from medical school. lab technician — An individual trained in how to draw and analyze fluids and blood. lactation consultant — An individual who has special knowledge about breastfeeding and who can assist with nursing and pumping questions and problems. medical student — A student in medical school who is taking courses and training to become a doctor. neonatal fellow — A doctor who has completed her/his residency in pediatrics and is training to become a neonatologist. Neonatal nurse — A registered nurse who has had special classes and training in the care of babies in the NICU. The neonatal nurse it a family’s main contact in the NICU, the principal source of daily information, and the caregiver who has the most regular contact with the babies. In the most intensive sections of the NICU, a neonatal nurse may have only one or two patients for an entire eight or twelve-hour shift. Neonatal clinical specialist/practitioner — A registered nurse with a master’s degree who has received specific training in the care of sick and pre-term infants. neonatologist — A pediatrician who has gone through special training in the care of sick and premature infants and has been board certified in neonatology. neurologist — A medical doctor with special training in the assessment of disorders of the nervous system and brain. nurse coordinator — An experienced neonatal nurse in charge of all the nurses during a shift — the NICU "head nurse." Nurse practitioner — A registered nurse with a master’s degree in nursing, with specialized training, who while working under the supervision of a doctor can tend to certain areas of an infant’s medical care. nutritionist — An individual with special knowledge about diet and nutrients necessary for an infant’s growth. occupational therapist (OT) — A therapist skilled in the assessment and treatment of fine motor skills and, in the NICU, involved in developmental care intended to help preemies and other sick newborns overcome their difficult starts in life. OTs may consult on cases involving feeding difficulties, pain management, disabilities, brain damage and a variety of other ailments common in infants who spend long periods of time in intensive care. pediatric cardiologists — A doctor with special training in treating infant heart ailments pediatric ophthalmologist — A doctor with special training in the assessment and correction of disorders in the eyes of infants and children. Pediatric resident — A doctor receiving special training to become a pediatrician. pharmacist — An individual trained in preparing medications, calculating proper dosages and safeguarding against overdoses and adverse drug interactions. primary nurse — A registered staff nurse who is in charge of the principal care of several infants in the NICU. respiratory therapist — An individual trained in the operation of respirators and in performing procedures which assist a patient’s oxygen intake and breathing. radiologist — Physician trained in interpreting images of the body’s interior organs and structures obtained via X ray, ultrasound and other technologies. social worker — An individual who has received special training to help families deal with their reactions to having an ill or preterm baby and to help them make necessary housing, transportation, and financial arrangements. ultrasound technician — An expert in obtaining ultrasound images of infants’ organs, typically the brain, kidneys and abdominal organs. unit secretary/coordinator — An individual who greets patients, does the paperwork and answers the telephone in the NICU. X-Ray technician — An individual who operates the equipment used for taking X-rays.
Common medications, procedures and treatments in the NICUAlbumen — The protein portion of blood serum. Given to increase blood volume in infants who have lost blood. Albuterol — A drug used to relax and open up airways in babies with respiratory difficulty. Amikacin — An antibiotic. Aminophylline — Intravenous drug that stimulates the breathing center of the brain; used to treat apnea of prematurity. Ampicillin — A common broad-spectrum antibiotic often used in the NICU; from the penicillin family of drugs. Apgar Score — An assessment of a newborn’s status — respiration, pulse, color, muscle tone and reflexes, with each category receiving 0, 1 or 2 points, creating an Apgar range of 0 to 10 scale. This is done at birth, at age five minutes, and then at five minute intervals until the infant is medically stable. A normal newborn will score 7 or higher. From 4 to 6 indicates a need for assistance and 3 or below requires full resuscitation. Preemies are expected to score lower than full-term infants. Although Apgar is used as an acronym, as in the chart below, it is actually named for the pioneering pediatrician who invented this assessment tool, Dr. Virginia Apgar. Apgar scoring is universally performed at births in the United States and many other countries, but it is notoriously subjective (the running joke is that no baby ever gets a ten, except for the children of obstetricians and neonatologists, who do the scoring) and other more precise methods of assessing a newborn’s condition are being developed.
Bagging — Also called hand-bagging. The use of an oxygen bag and face mask (or breathing tube), usually by a respiratory therapist, to pump air into the lungs by hand, usually immediately after birth in cases of respiratory distress, as a prelude to mechanical ventilation, when a baby with breathing difficulties is being moved from one location to another in the NICU or elsewhere in the hospital, or during respiratory crises. Caffeine — Used to stimulate the breathing center of the infant brain; used to treat apnea of prematurity. Canula (nasal) — Pronged plastic tubing that fits inside an infant’s nose and delivers oxygen-enriched air. Catheter, umbilical (arterial or venous) — A tube inserted into vessels in the umbilical cord to deliver fluids and medication or to remove blood for testing; the venous line can be used to monitor blood pressure as well. Central Line (Central Venous Line) — An intravenous line placed into a vein and fed through until its end lies just outside the heart. Cefotaxime Sodium — Powerful antibiotic used to combat sepsis. Colostomy — A surgical opening through which stool can be drained from the large intestine. Often used as a temporary measure to promote healing following bowel surgery or repair. When the drain is attached to the small intestine, the procedure is called an ileostomy. Complete Blood Count (CBC) — A lab test that measures red blood cells, white blood cells and platelets. Often the first indicator of possible infection CPAP — Continued Positive Airway Pressure, a type of respiratory assistance that keeps the lungs air sacs open during and after each breath. Can be delivered through tubes in the nose, or through a breathing tube placed in the trachea, as with mechanical ventilation. Sometimes used as a midstep between a nasal canula and mechanical ventilation. Cryotherapy — Also called cryosurgery. Uses liquid nitrogen to freeze damaged tissue. Particularly useful for treating the eye disease Retinopathy of Prematurity. Culture — A lab test which detects infectious organisms in the body by placing blood samples in a special dish and monitoring them for twenty-four to seventy-two hours. Dexamethasone (Decadron) — A steroid that can improve lung function in some infants with respiratory distress. Dobutamine and Dopamine — Drugs used to raise low blood pressure and low urine output. Doxapram — A drug used to treat apnea of prematurity that does not respond to a more commonly prescribed drug, theophylline. Echocardiogram — An ultrasound image of the heart. Often called a "heart echo." ECMO (Extracorporeal oxygenation) — The use of a modified heart-lung bypass machine to provide oxygen to a baby’s blood. A radical procedure with many side effects, it is generally used only as last resort, when mechanical ventilation and other treatments have failed. Electrolytes (’lytes) — Basic elements in the blood that must be maintained in proper balance, and that include sodium, potassium, chloride, calcium and magnesium. Levels of these elements are monitored by frequent blood tests in the NICU — the test is also generically referred to simply as “Electrolytes” or “’lytes.” By using these test results, levels of these elements are kept in balance by providing one or more of them through intravenous solutions. Epinephrine — A powerful heart stimulant; often used to treat cardiac failure and low blood pressure. Extubation and intubation — Intubation is the placement of a breathing tube (referred to in the NICU as an ET tube or entotracheal tube) into the windpipe, usually as a prelude to mechanical ventilation. Extubation is the removal of that tube. Fentanyl — Narcotic used for pain relief and sedation; addictive and can lead to withdrawal symptoms, requiring a gradual weaning over time. Reserved primarily for infants receiving mechanical ventilatory assistance, due to its tendency to depress respiration. Furosemide (Lasix) — A diuretic used to aid the kidneys and reduce edema. Gastrostomy tube (G-tube) — A feeding tube surgically inserted through the abdominal wall and into the stomach for babies with feeding problems. Gavage — Feeding through a tube inserted through the mouth or nose and into the stomach, for babies ready for oral nourishment but who are too premature or too sick to coordinate sucking, swallowing and breathing safely. Gentamicin — Another commonly used, broad-spectrum antibiotic. Ibuprofen — Common anti-inflammatory and pain-relieving drug recently show to be effective in closing a patent ductus arteriosus in premature babies. Indomethacin (Indocin) — Medication used to close a patent ductus arteriosus (PDA) in preemies. Can cause depressed kidney function and edema; may be superseded by Ibuprofen now that studies show it may be as effective but without the side effects. IV Infusion — A continuous pumping of medications, nourishment or other fluids into the baby’s bloodstream, usually with an electronically timed and calibrated pump. Lorazepam (Ativan) — Common sedative for newborns. Often used with babies receiving mechanical ventilation, to ease distress caused by the breathing tube. Mechanical ventilation — Use of a machine that assists or takes over breathing effort, both filling and emptying lungs. Breathing rate, oxygen levels and pressure can be raised or lowered according to an infant’s needs and level of respiratory distress. Three principal types are used: the conventional ventilator (which allows the lungs to inhale and exhale in normal breathing rhythms), and the high-frequency jet ventilator and the high-frequency oscillating ventilator (which use very small puffs of air delivered rapidly to oxygenate the blood without requiring full inhalations and exhalations). Nitric oxide (NO) therapy — New treatment that uses minute quantities of this normally toxic gas (a principal component of smog) to relax blood vessels in the lungs and relieve persistent pulmonary hypertension of the newborn, a serious and potentially fatal condition. NO therapy has reduced the need for the more dangerous ECMO procedure. Pancuronium Bromide (Pavulon) — A paralyzing drug; only used on babies on ventilators. Phenobarbital — An anticonvulsant used to treat seizures. Pulse oximeter (Pulsox) — A device that wraps around the hand of foot of an infant and measures the oxygen saturation of the blood, sounding an alarm when levels dip too low. Surfactant therapy — A treatment that places in the lungs a critical fatty substance — surfactant — missing in premature babies and that is essential for keeping the air sacs and other lung tissue from adhering and scarring. Used to prevent and treat respiratory distress, this therapy has only been widely available since 1990 and since then has prevented many cases of chronic lung disease while greatly improving the survival and outlook of extremely premature babies. Theophylline — Oral drug, similar to aminophylline, that stimulates the breathing center of the brain; used to treat apnea of prematurity. TORCH Screen — A lab test for infections that can be contracted in utero from the mother. TORCH is an acronym for Toxoplasmosis, Other viruses, Rubella virus, Cytomegalovirus, and Herpes simplex virus. Total parenteral nutrition (TPN) — Also called hyperalimentation, it is the provision of all nutritional and fluid needs by intravenous line instead of through oral feeding. Tracheostomy — A surgical opening through the neck and into the windpipe, commonly called a "trake." May be used when mechanical ventilation is needed for long periods of time, in order to free the mouth and tongue from the breathing tube and to promote feeding and development. Infants discharged with home ventilators because of chronic breathing difficulties generally receive tracheostomies first. Transfusion — Giving of fluid — blood or any of its components — directly into the bloodstream. Transfusion, exchange — Replacing a significant portion of an infant’s blood with donated blood, often to reduce harmfully high levels of certain substances in the blood, such as bilirubin. Ultrasound — The use of sonic waves to create images of body structures and organs. Often used for brain scans in the NICU, called "head ultrasounds." Vancomycin — An antibiotic. Versed — A sedative used to calm agitated infants.
Q & A For Parents of Critically Ill NewbornsWhat are the chances a premature baby will survive? What are the chances a premature baby will have disabilities? How many premature babies are born every year, and what are the odds my baby will be premature? Is the premature birth rate falling or rising? What are the chances a premature baby will survive?Many factors determine an individual baby’s chances of survival. The most important of these are:
In the smallest infants, gestational age is usually most important because it determines if the infant’s organs, particularly the lungs, have developed enough to allow the baby to live within the limits of our current technology. Your baby’s doctor will be able to give you the best estimate of your infant’s chances since he/she can take into consideration many of the above factors. But no estimate is perfect. Some babies suddenly get sick and die unexpectedly; others defy all odds. In general, twenty four weeks is the cutoff for viability and likely survival, though policies vary from hospital to hospital, doctor to doctor, nation to nation and case to case. The United States is among the most aggressive in treating extremely small preemies, though intensive efforts to save babies before the twenty-four week mark remain quite controversial because of the low survival percentage and very high percentage of severe disability among the survivors. It should be noted that babies with serious medical problems who are born in hospitals with large and advanced (Level III) NICUs have a thirty-eight percent greater chance of survival than those born in hospitals with little or no neonatal care available. (Babies born in need of neonatal care at smaller hospitals are often transported by ambulance to hospitals with NICUs, delaying care and adding to stress on the infant). General estimates of survival for live born infants in the USA are:
A baby’s chances for survival increases 3-4% per day between 23 and 24 weeks of gestation and about 2-3% per day between 24 and 26 weeks of gestation. After 26 weeks the rate of survival increases at a much slower rate because survival is high already. Other factors may influence survival by altering the rate of organ maturation or by changing the supply of oxygen to the developing fetus.
To prevent or postpone a premature birth:
Source: University of Wisconsin Medical School; Long Beach Memorial Medical Center; Wesley Medical Center, Wichita, KS What are the chances my premature baby will be disabled?For any infant, IT IS IMPOSSIBLE TO PREDICT AHEAD OF TIME THE LIKELIHOOD OF A SIGNIFICANT HANDICAP (moderate or severe mental retardation, inability to walk without assistance, blindness or deafness). However, some factors increase the RISK of these handicaps:
Babies born after 30 weeks have only a ten percent greater chance of a major handicap. Most children with significant disabilities enjoy life and are a source of pleasure to their parents. But many parents whose children were extremely premature and who are severely impaired have complained that they did not fully appreciate the consequences of taking heroic measures to preserve the lives of their premature children. Some, in hindsight, have said they would have decided to withhold some treatments had they known the likely result. This is a source of considerable controversy among the parents of preemies and their physicians, with no easy resolution. Most neonatologists now take pains to explain the benefits and risks of resuscitating and treating extremely small preemies, involving parents in each step of the decision-making process. Minor disabilities occur in about 15% of children born on time. They occur more often in premature infants, approximately half of infants weighing less than 3 1/2 pounds at birth. Many of these are not appreciated until school age. Common minor disabilities include short attention span; specific learning problems in school such as difficulty with math or reading; poorer than average coordination, especially for games requiring eye-hand coordination like hitting a ball; and needing glasses at an early age. Children with minor disabilities usually lead normal lives. Early identification of these problems helps make learning easier. Additional information can be obtained from these articles from the August 10, 2000 edition of the New England Journal of Medicine, on studies of long term outcomes of preemies. Abstract of article on the study, Neurologic and Developmental Disability after Extremely Preterm Birth. Editorial on the subject of how far to go in saving preemies, Extremely Preterm Birth — Defining the Limits of Hope. Another study, performed at Syracuse University, reached complimentary conclusions, as reported by the Associated Press in Premature Kids Linked to Problems. Source: University of Wisconsin Medical School; Long Beach Memorial Medical Center; New England Journal of Medicine; Associated Press; Wesley Medical Center. When does my baby go home?Most preemies are discharged at or near their original due date, though this varies depending up their specific medical condition. In general, preemies should reach at least 5 pounds in weight and be capable of "nippling all feeds" — i.e., able to take sufficient nourishment from bottle or breast to gain weight — before they can be discharged. The also must be capable of maintaining steady body temperature. (Nipple feeding does not begin before a baby reaches a gestational age of thirty-four weeks; before that intravenous and gavage feedings are used.) What happens after the NICU?The vast majority of infants have short and unremarkable courses in the NICU, and need little follow-up beyond routine checkups at their pediatrician. However, longer-term NICU patients, and those with chronic conditions, respiratory problems, or who had prolonged treatment with mechanical ventilation, need ongoing, regular follow-up. Major NICUs have substantive discharge planning programs that arrange for care and follow-up for infants, tailor-made for each baby and which can include home-health nurse visits, special clinics, work with occupational and physical therapists, respite care for parents, and other programs, some of which can last for years. Each NICU maintains lists of pediatricians in the community who have the skills and willingness to take on former preemies and other NICU graduates with special needs and serious ailments (not all pediatricians have this capability — when in doubt, parents should ask about this). In general, decisions will be made about the risk a baby has for serious medical and developmental problems after the NICU, and after-care will be set up accordingly. The goal is to monitor a child’s progress, to make sure they are receiving needed medical care, and to assess their development as they reach various milestones (sitting up, crawling, grasping, communicating, etc.) In general, the most intensive, high-risk follow up is reserved for babies who meet any of the following criteria, based on California Children’s Services guidelines (these guidelines, from Cedars-Sinai Medical Center, are typical):
Adapted from CCS criteria listed in Section 2.17.1. (It should be noted that meeting these guidelines is only an indicator that a baby is at risk, not that any particular infant suffers from or will suffer from disability or other problems.) Babies at risk for infections and respiratory problems and smaller preemies should receive a series of antiviral Synagis injections at and after discharge to ward off RSV, a common virus that gives most children and adults nothing worse than a cold, but which can represent a serious health risk for some NICU graduates. For more information on RSV, click here. Despite this planning process and follow-up, parents of NICU babies with significant medical needs and/or profound disabilities often find themselves overwhelmed emotionally, socially and financially. The enormous and life-changing commitment of time, energy and money required (especially in an era when insurance companies and HMOs are eager to limit coverage) can tax marriages, careers and the emotional well-being of parents and families. The tendency to feel alone and embattled is great, but many others are facing similar challenges and can help parents in innumerable ways. Support groups within hospitals, communities and online (Preemie-L and After the NICU are good places to start) are available for parents of preemies and other sick infants, and there are innumerable pamphlets available in most NICUs. Some excellent guidebooks are also available, including Caring for Your Premature Baby, by Alan H. Klein and Jill Alison Ganon, and Newborn Intensive Care: What Every Parent Needs to Know by Jeanette Zaichkin. How many premature babies are born every year, and what are the odds my baby will be premature?Last year, about 4 million babies were born in the United States. Of these, one in ten — 400,000 — will need neonatal care of some sort (for prematurity, birth defects, infections, etc.) Slightly more than this percentage will be born premature. Thus there is a one in ten chance that your pregnancy will end before the complete forty weeks of gestation nature intended, and a similar probability that a baby will need neonatal intervention of some sort. A smaller proportion of newborns will be gravely ill: About 40,000 births a year in the U.S. involve babies born with very low birth weights and gestational ages, who suffer serious complications and require intensive care for long periods of time. Predicting the odds that any one pregnancy will end prematurely is difficult at best, and often impossible. Maternal age, general health, and specific medical conditions — such as diabetes, blood pressure ailments, incompetent cervix, toxemia, etc. — as well as ailments afflicting the unborn child (such as heart defects, Down Syndrome, multiple embryos, the use of fertility treatments) can increase the risk of premature birth. However, about forty percent of premature births have no known cause and can occur in otherwise healthy women with seemingly problem-free pregnancies. Regular consultation and examinations with an obstetrician and regular prenatal care throughout pregnancy is the best way of assessing whether there is a risk of prematurity, preventing premature birth, and minimizing harmful effects should premature birth become inevitable (certain drugs and other therapies can postpone labor and speed the development of infants’ lungs, increasing survival and decreasing potential complications). Is the premature birth rate falling or rising?The National Institute of Health reports that the rate of premature and low-birth weight births has increased in recent years, contrary to expectations, and now exceeds 11 percent of all births in the United States. It had been hoped that better prenatal care — which more women than ever are seeking out — would cause that rate to lower. However the advent of aggressive new fertility drugs and treatments, such as in vitro fertilization, has led to skyrocketing rates of multiple births — a fifty percent rise in twins, and a four hundred percent rise in triplets and higher-order multiples. Because multiple pregnancies are at greater risk for prematurity and other complications, and because the women who employ those treatments tend to be older than the general child-bearing population, further increasing the risk of complications, higher rates of prematurity are the direct result of these new fertility treatments. Many countries place legal limits on the number of embryos that can be implanted through artificial means — Great Britain limits it to two — so as to minimize the possibility of producing premature and damaged infants.
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