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VERY LOW BIRTH WEIGHT OR Rev. 1 CRITICALLY ILL INFANTS June 2001 ANTENATAL DIAGNOSIS OF MAJOR CONGENITAL MALFORMATIONS When a major congenital malformation is diagnosed antenatally, the following procedure is recommended: 1. Obstetric consultation and/or telephone consultation with a perinatologist, which may be

followed by referral to the Perinatal Clinic at the Royal Alexandra Hospital (477-4813) for consultation, detailed ultrasound evaluation, amniocentesis/CVS/PUBS or other tests as considered appropriate. Ongoing care may remain with the primary obstetrician or transfer to the perinatologist, as appropriate.

2. In suitable cases, the perinatologist will organize a conference with the parents and the

appropriate specialists. This normally includes the primary obstetrician, perinatologist, neonatologist, geneticist, social worker, and appropriate subspecialist(s). In this way, a management plan can be determined and will be known to all.

3. Delivery may take place at the Royal Alexandra Hospital (RAH) if the Neonatal Intensive

Care Unit (NICU) will be required, or patients may be referred back to the primary physician. If the plan involves referral back to a primary physician from an alternate facility, it may be appropriate to include the nurse manager and/or social worker from that site in the conference mentioned in point 2 above.

4. Site of management of the neonate will depend on the antenatal diagnosis and postnatal

findings. In the case of congenital heart defects and neurosurgical abnormalities, this will usually involve transfer to the University of Alberta (UAH) site NICU at the Stollery Children’s Health Centre.

4.1 Timing of the delivery (i.e., induction or elective cesarean section) is to be coordinated

with the neonatal service, and the NICU must be informed explicitly as to anticipated neonatal problems. This is necessary in order to ensure that the appropriate neonatologist (e.g. cardiac or neurosurgeon) is available at the time of delivery.

4.2 In the interest of patient safety, no deliveries should take place at the UAH. If an infant

is transferred to the Stollery NICU, the mother should be issued passes to UAH to be with her baby. If delivery of the infant at UAH is absolutely preferable, an experienced postpartum nurse will be transferred to the UAH unit, where possible, in order to care for the mother. (This needs to be arranged on a case-by-case basis through discussions with physicians and nursing management of the site postpartum unit, and will only be done if such resources can be made available.) It should be noted that this would only be in the case of delivery by elective cesarean section, as labour and delivery services are not available at UAH.

Women’s Health Program

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TRANSFER GUIDELINES – VERY PRETERM LABOUR/DELIVERY 1. When labour or delivery occurs at gestations between 23 and 32 weeks (for level II sites) or

between 23 and 35 weeks (level I sites), transfer to the RAH should be facilitated. ♦ For antenatal transfers, the Critical Care Line should be used for within-region (413-

4000) as well as out-of-region (1-800-282-9911) transfers, so that all appropriate specialists, including neonatology, can be included in the call.

♦ If delivery has occurred at a site other than the RAH, the Neonatal Transport line should be used for neonatal transfers (407-6727). (Note: The Critical Care Line operator will automatically connect the call with the NICU Team if patient is <14 days of age, but calling directly may prevent unnecessary delay.)

2. When labour occurs at gestations <23 weeks (when dates have been confirmed) or <500

grams estimated fetal weight, and delivery is inevitable, transfer to the tertiary centre for delivery may not be required, as survival of infants prior to 23 weeks gestation and <500 grams is rare and not without significant morbidity. (Refer to Appendix – Outcome of Very Low Birth Weight Infants in Northern Alberta.) If in doubt, however, the attending physician should consult with the on-call obstetrician or perinatologist and/or neonatologist at the RAH, using the Critical Care Line or Neonatal Transport line as indicated above.

RESUSCITATION OF CRITICALLY ILL OR VERY LOW BIRTHWEIGHT INFANTS 1. Alberta records have shown that babies weighing ≤500 grams at birth have a very low

chance (3%) of survival and almost no chance (0.5%) of surviving without significant disability. Furthermore, even at 29 weeks gestation, surviving infants born at less than the first percentile for birth weight, which would be 600-700 grams, suffer severe disability. (Refer to graph with Appendix.) Therefore, active resuscitation is not normally recommended if the infant is: ♦ <23 weeks gestation, or ♦ <500 grams, or ♦ ≤29 weeks gestation and less than the first percentile for birth weight, or ♦ suffering from severe congenital anomaly.

Furthermore, some babies at 23-25 weeks gestation may not be actively resuscitated, depending on the clinical situation. This decision will be made following consultation among the obstetrician/perinatologist, neonatologist, and the parents.

2. Notwithstanding point #1 above, the decision of whether or not to resuscitate and how to manage infants born at the borderline of viability is made by the neonatologist(s), usually jointly after consultation with the parents and other health care providers as appropriate. ♦ If no physician is present at delivery, resuscitation in the delivery room or newborn

nursery/NICU should be initiated to the best of the nursing and/or other staff members’ abilities. The responsibility for withholding or discontinuing resuscitation is then that of the neonatologist/pediatrician and/or other attending physician, in consultation with parents.

♦ All liveborn infants, regardless of size or medical problems or resuscitation decision, should be given comfort and compassionate, supportive care, including pain relief as required.

3. Where appropriate, and if time permits, consultation with the hospital Ethics departments

may be required.

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4. Parents should be offered follow-up grief support in the event of death of the baby. Genetic counselling, if appropriate, should be arranged by the obstetrician. Further counselling by the obstetrician regarding the chance of recurrence and how to avoid recurrence should also be provided.

5. The site Perinatal Mortality & Morbidity Committee should receive all information from such

cases. Outcomes from case reviews will be monitored in order to obtain up-to-date information to provide to parents and caregivers.

Sources ♦ Antenatal Diagnosis of Major Congenital Malformations. CHA Women’s Health Program, Dec. 2, 1996. ♦ Resuscitation and Care of Critically Ill Newborns. College of Physicians & Surgeons of Alberta, June 2000. Reviewed by ♦ Dr. Nan Schuurmans, Regional Program Clinical Director, Women’s Health, May 2001 ♦ Dr. Radha Chari, Maternal/Fetal Medicine Subspecialist, University of Alberta, May 2001 ♦ Dr. Con Sreenan, Neonatologist, Royal Alexandra Hospital, May 2001 ♦ Dr. Nestor Demianczuk, Director of Maternal/Fetal Medicine, Royal Alexandra Hospital, June 2001 ♦ Discussed at Women’s Health Program Council meeting, May 28, 2001

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APPENDIX OUTCOME OF VERY LOW BIRTH WEIGHT INFANTS

IN NORTHERN ALBERTA INTRODUCTION Very difficult decisions arise when pregnancy complications occur at extremely early gestations (22-27 weeks, term being 40 weeks), at which time the fetus may be on the borderline of viability. The information on this sheet is intended to be of assistance to parents and their obstetrician when discussing such a difficult situation. The data are derived from the two tertiary neonatal intensive care units (Royal Alexandra Hospital and University of Alberta Hospital) in Northern Alberta and the Neonatal Follow-up Clinic over the years 1993-1997 inclusive. Mortality describes the risk of death as a percentage among babies who survive long enough to be admitted to the NICU. Morbidity describes the risk of disability amongst survivors as a percentage, and relates to brain injury (i.e. neurodevelopmental disability). This includes cerebral palsy, low mental activity, seizures, and visual and auditory deficits. Other disabilities which may also occur relate to growth, feeding and breathing. Gestation refers to the number of completed weeks of the pregnancy starting with the first day of the last menstrual period. This information is available to the obstetrician, but is not as accurate as dating, which can be obtained from an ultrasound examination early in pregnancy. It is important to determine the duration of the pregnancy (calculated in weeks) as accurately as possible. Birth weight is an accurate measurement, but is only available after the baby is born. The obstetrician may be able to obtain an estimated fetal weight based on ultrasound measurements, which is usually reasonably close but not as accurate as the actual birth weight. IUGR (intrauterine growth restriction) refers to the situation when a fetus is much smaller than would be expected for the duration of the pregnancy (gestation). This is described in percentiles, so that if at a certain gestation a baby’s weight falls below the 10th percentile, this means that only 10% of babies at that gestation will weigh less than this number. Babies below the first percentile for birth weight are considered to be exceedingly growth restricted. OUTCOME FOR NORTHERN ALBERTA BABIES

GESTATION (weeks) 22 23 24 25 26 27 28 29 30 Mortality (%) 88 61 32 31 22 11 3 6 4 Morbidity (%) 50 47 32 23 28 15 13 6

BIRTH WEIGHT (grams) 400-499 500-599 600-699 700-799 800-899 900-999 Mortality (%) 64 51 55 33 21 3 Morbidity (%) 75 44 29 32 22 11

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EXCEEDINGLY LOW BIRTH WEIGHT In Alberta from 1983 to 1994, there were 382 liveborn babies of 500 grams birth weight or less. Thirteen survived to age 3 years, of whom only 4 were free of disability and 2 are within the average range of intelligence. SEVERE IUGR Data from the Neonatal Follow-up Clinic shows that all survivors of less than or equal to 29 weeks gestation, and less than the first percentile for birth weight, are severely disabled (see attached charts: Arbuckle et al, Obstet Gynecol 1993;81:39-48). CONCLUSION We recommend that babies of less than 500 grams birth weight and/or less than the first percentile for birth weight (if 29 weeks or less) should not be actively resuscitated. Because of the difficulties and inaccuracies in the obstetrical estimate of gestational age and fetal weight prior to delivery, this recommendation still applies even though delivery may have been effected by cesarean section, because the true birth weight will not be known until a few seconds after delivery. If parents insist upon the resuscitation of a baby who meets these criteria, they must understand that the likelihood of death or severe disability is exceedingly high. It is most unlikely that a normal child will result from resuscitating such a newborn. Philip C. Etches, M.B. Nestor Demianczuk, M.D. Charlene Robertson, M.D. COPYRIGHT 2000