Primigravida in 23/24 weeks of twin pregnancy after IVF/ET with chorioamnionitis and visible amniotic membranes of first twin was admitted to our hospital demanding caesarean section. Ethical Committee declined patient’s request, and within 20 minutes vaginal delivery occur. The first twin’s fetal weight was 610g with a 1-minute Apgar score of 3 and a 5-minute score of 4. The neonate was immediately resuscitated, intubated and required mechanical ventilation with Surfactant endotracheal administration. On the first postpartal day an ultrasound examination detected a grade 3 intraventricular haemorrhage (IVH) with clot dissolving and convulsions in clinical status. The newborn was hyperglycaemic with confirmed perinatal infection and a grade 1 necrotic enterocolitis (NEC). Regarding persistent ductus arteriosus indomethacin was administered. During the NICU stay porencephalic cysts and hydrocephalus arose without visible brain tissue. On the 75th postpartal day cardiorespiratory insufficiency occurred with lethal outcome. The second twin’s fetal weight was 680g with a 1-minute Apgar score of 2 and a 5-minute Apgar score of 3. The baby was born with bradycardia and had a few gasps. The neonate was immediately resuscitated, intubated and high-frequency mechanically ventilated. Surfactant was administered endotracheally. An ultrasound detected grade 3 IVH. Lethal outcome appeared on first postpartal day. In the second case there was a premature delivery of neonates of 23 weeks gestational age, BW 749g. The parents were not interested in resuscitation, and the baby showed weak signs of life. The issue of whether or not to intubate arose. Therefore, a dilemma appeared – to reanimate in such conditions, or not? To use an aggressive approach in the NICU, or not? There were ethical dilemmas within the medical personnel regarding resuscitation in such conditions considering the presented clinical and laboratory findings from the first postpartal day. Comfort care is probably the best option, but without medico-legal regulations this is impossible.
Key words: extremely low gestational age infants, ethical dilemmas, resuscitation, delivery room, NICU (Neonatal Intensive Care Unit)
In last decades improved medical technology has led to surveillance of extremely low gestational age infants (ELGAN); preterm newborns ≤28 weeks of gestation. In recent years, the surveillance rate of preterm newborns ≤25weeks of gestation is in permanent rise.
Preterm deliveries in such a gestational age bear many ethical dilemmas, not only for perinatologists (the route of delivery), but also for neonatologists; from the approach of immediate need for postpartal resuscitation to further complex procedures in the NICU. (1)
Immaturity is regularly presented with respiratory insufficiency (mechanical ventilation, surfactant), hemodynamic instability, brain tissue damage (leukomalacia, haemorrhage, atrophy), increased risk for ophthalmologic abnormalities, sensorineural hearing loss, renal insufficiency, decreased resistance for infections and sepsis, which leads to life-threatening conditions confronting medical personnel with ethical dilemmas, while facilitating required care of the infant by subspecialists and other health care professionals.
Team work between perinatologists and neonatologists, as well as effective communication with informed parents, and written medical protocols/guidelines that highlight the shared responsibility of the care of the infant with all professionals involved in the care of the infant, may help with this complex ethical issue.
Some countries have established palliative care supporting the best possible quality of life for high risk, severely ill and extremely premature and/or damaged newborns. (2) In our country there is no legislation covering such issues.
Morbidity and mortality of elgans
Many studies present considerable high morbidity and mortality in premature newborns ≤25 weeks of gestation, even up to 100 times (3) According Tyson et al. Data on extremely low birth weight of premature newborns ≤ 500g reports a year survival rate of 15.5%. (4) Using revised Griffit 0-2 years Mental Development Scales, Sansavini et al. it was confirmed that the MDI (mental development index) in VLBW infants was 101.7 (SD 15.4), which was lower compared with FT (full term neonates) controls (109.8, SD 11.7, p < 0.001). In regression analysis of the demographic and medical data of VLBW infants, postnatal corticosteroids (p = 0.04), intestinal perforation (p = 0.03) and major brain pathology (p = 0.02) were negatively associated with the MDI. Finnish authors present that in VLBW infants, the prevalence of neurodevelopmental impairment was 9.9% (3.3% MDI below 70, 7.1% cerebral palsy, 2.2% hearing aid, no blind infants). (5) Extremely low and very low gestational age premature newborns (ELGA and VLGA) constitutes a risk factor for development even in the absence of cerebral damage, as an immature central nervous system is exposed to invasive and inadequate stimulation. (6) Swedish authors also found increased morbidity in ELGANs admitted to NICUs. (7)
There are many follow-up studies of ELGANs in pre-school and school age with detected increased morbidity rates. (8-10) However, the survival rate and outcome of premature infants ≤26 weeks highly depends of the level of medical care (preferably tertiary centre) and the ability of NICUs. (11)
Table 1. Live born infants according to gestational age
ga – gestational age
Table 2. Our periviability guidelines recommendation
|Obstetric care||Neonatal care||Expected neurological sequelae (%)|
|≤ 23||No CS
Steroids only in case of NICU admission
|23-23+6||CS for fetal indications only in case of NICU admission
Steroids only in case of NICU admission
|Comfort care recommended
Resuscitation and NICU in case of parental choice
|24-24+6||Steroids are recommended
CS for fetal indications after consultation with obstetrician/neonatologist
Medical staff will support parental choice
|25-25+6||Steroids are recommended
CS for fetal indications after consultation with obstetrician/neonatologist
|Resuscitation and NICU care recommended||25-35%|
|26-26+6||Steroids are recommended
CS for fetal indications is recommended
|NICU care recommended with exception of major congenital anomalies incompatible with life||20%|
Do not resuscitate (DNR) documents are in use in hospitals and accepted in some high-income countries with established protocols in the treatment of extremely premature newborns from the periviable stage of pregnancy. (12) Parents have a choice between an aggressive treatment approach in NICUs versus comfort care for their extremely premature child.
Kaempf et al. investigated active NICU resuscitation procedures versus PCC (Palliative Comfort Care) over a 16 year period of time. (13)
They compared outcomes of extremely premature newborns divided in two groups according parental choice; one group with active NICU procedures versus another group with palliative care. They found no significance in survival rates and established the Providence St. Vincent Medical Center written protocol for Obstetric and Neonatal care in periviable gestation.
In everyday clinical work, not all doctors are satisfied with parental autonomy in such decisions. Irrespective of gestational age, a live born infant should (like any other patient) be presumed to benefit from active resuscitation and management. It has been shown (14) that proactive management at birth promotes survival without negative effects on neurodevelopmental outcome. As, during the ensuing period of intensive care, more information becomes available, the infant’s individual prognosis becomes clearer and the information given to the parents can be improved. (15)
What does “Comfort care for extremely premature newborns” mean in our third level NICU?
It means that in ELGANs with severe lesions, extreme pain, convulsions, high chance for unfavourable outcome or survival with severe damage, it is time for parental choice for possible palliative care.
So, what does “Comfort care” in the NICU really mean?
In our opinion, it means sedation, nutrition (10% Glucose and electrolytes), turning off the alarms on monitors and slowly extubation. Building a strong relationship between the medical team, and the child and family is of utmost importance for maximizing their time together as a family. Assisting families facing a life-threatening fetal diagnosis always involves unique challenges.
Confronted with complex and challenging procedures that periviable extremely preterm newborns need (16, 17) (table 1 and figure 1), we highly advocate consensus-based guidelines for palliative care and their implementation in Croatian third level NICUs (table 2) as Mancini et al. extensively annotate for Royal College of Paediatrics and Child Health. (18)
We suggest an active approach for viable extremely premature neonates born ≥ 23 weeks of gestation with immediate resuscitation in the delivery room, which decreases morbidity rates and provides more favourable outcomes. But what should be done if parents do not want resuscitation of relatively viable premature newborns below 25 weeks? Must we respect their decision? And what does that mean? Not intubate, or something else? We do not have a legal solution for this in our country.
NICU procedures in such infants are supposed to be active until severe complications like multiorgan lesions, sepsis or NEC complicated with perforations occurs.
Such situations adjust the need for palliative care with a strong relationship between the medical team, and the child and family with prior positive legislative regulation in our country.
- Committee on Fetus and Newborn. Noninitiation or Withdrawal of Intensive Care for High-Risk Newborns. Pediatrics 2007; 119 (2).
- Catlin A, Carter B. Creation of a Neonatal End-of-Life Palliative Care Protocol Journal of Perinatology 2002; 22:184 – 195.
- MacDoman MF, Hoyert DL, Mathews TJ. Recent declines in infant mortality in the United States, 2005-2011. NCHS Data Brief. 2013; 1-8.
- Tyson JE, Parkh NA, Langer J, Green C, Higgins RD. Intensive care for extreme prematurity- moving beyond gestational age. N Engl J Med 2008; 358(16):1627-81.
- Sansavini Savini S, Guarini A, Broccoli S., Alessandroni R, Faldella G. The effect of gestational age on developmental outcomes: a longitudinal study in the first 2 years of life. Child: care, health and development, 2010; 37(1): 26–36cdoi:10.1111/j.1365-2214.2010.01143.xch
- Munck P, Haataja L, Maunu J, Parkkola R, Rikalainen H, Lapinleimu H, Lehtonen L, the PIPARI Study Group. Cognitive outcome at 2 years of age in Finnish infants with very low birth weight born between 2001 and 2006. Acta Pædiatrica 2010; 99: 359–366.
- The EXPRESS Group. Incidence of and risk factors for neonatal morbidity after active perinatal care: extremely preterm infants study in Sweden (EXPRESS) Acta Pædiatrica 2010; 99:978–992.
- Kutz1 P, Horsch S, Kühn L, Roll C. Single-centre vs. population-based outcome data of extremely preterm infants at the limits of viability. Acta Pædiatrica 2009; 98: 1451–1455.
- Pappas A,Kendrick DE, Shankaran S, Stoll BJ, Bell EF, Laptook AR, et al. Chrioamnionitis and early childhood outcomes among extremely low gestational age neonates. JAMA Pediatr. 2014;168(2):137-147.
- Carlo WA, McDonald Sa, Fanarof AA, Vohr BR, Stoll BJ, Ehrenkranz RA, et al. Association od antenatal corticosteroids with mortality and neurodevelopment outcomes among infants born at 22-25 weeks’ gestation. JAMA 2011; 306(21):2348-58.
- NICHD N. NIHCD Neonatal research network (NRN) Extremely preterm birth outcome calculator. Accessed 05/15, 2014;2012
- Raju TN, Mercer BM, Burchfield DJ, Joseph GF. Periviable birth: executive summary of a Joint Workshop by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Society for Maternal-Fetal Medicine, American Academy of Pediatrics, and American College of Obstetrition and Gynecologists. J Perinatol 2014;34(5):333-342.
- Kaempf JW, Tomlison MW, Tuohey J. Extremely premature birth and the choice of neonatal intensive care versus palliative comfort care. J Perinatol. 2016;36(3):190-195
- Hakansson S, Farooqi A, Holmberg PA , Serenius F, Hogberg U. Proactive management promotes outcome in extremely preterm infants: a population-based comparison of two perinatal management strategies. Pediatrics 2004; 114: 58–64.
- Meadow W, Lagatta J, Andrews B, Caldarelli L, Keiser A, Laporte J, et al. Just in time: ethical implications of serial predictions of death and morbidity for ventilated infants. Pediatrics 2008; 121: 732–40.
- Ahmetašević-Gverić S, Čolić A, Gašparović-Elveđi V. Broncchopulmonary dysplasia in extremely premature newborns. Neurol Croat 2013; 62 (S1): 87-90.
- Elveđi-Gašparović V, Maurac I, Beljan P, Gverić Ahmetašević S, Jurica-Anić S. Procalcitonin vs C- reactive protein in early detection of intrauterine infection in premature rupture of membranes and neonatal infection. Signa Vitae 2014; 9 (S1): 54-57.
- Mancini A, Uthaya S, Beardsley C, Wood D and Modi N. Practical guidance for the management of palliative care on neonatal units.Royal College of paediatrics and child health,1st edition, February, 2014.
This work is licensed under a Creative Commons Attribution 4.0 International License