Journal of Clinical Neonatology

ORIGINAL ARTICLE
Year
: 2022  |  Volume : 11  |  Issue : 4  |  Page : 202--205

Below the threshold of “Viability” - A middle east experience


Bibian N Ofoegbu, Amir Mohamed Abdelshafy, Philip James Simmons 
 Neonatal Intensive Care Unit (NICU), Corniche Hospital, Abu Dhabi, United Arab Emirates

Correspondence Address:
Bibian N Ofoegbu
Neonatal Unit, Corniche Hospital, P. O. Box 3788, Abu Dhabi
United Arab Emirates

Abstract

Background: The Corniche Hospital, Abu Dhabi, is the largest and most advanced perinatal center in the United Arab Emirate (UAE), providing care in line with international standards within its 64-cot NICU, serving a mainly Muslim population. We share our experience on outcomes of babies born in our center at 22 weeks' gestation, below the threshold of viability. At this gestation, a senior neonatologist attends each delivery to assess the baby, offer stabilization whilst assessing the baby's response. We then looked simply at the outcomes of these births. Methods: Retrospective data was collected from June 2011 to Dec 2020 using electronic hospital records and our in-house neonatal database – a nine-and-a-half-year period. Information on all babies born between 22 + 0 to 22 + 6 weeks gestation was sought; Gestational age was calculated from last menstrual period (LMP). Results: Over a nearly 10-year period, just over 67,000 live births occurred at our center, of which 134 babies were between 22 + 0- and 22 + 6-week gestation at birth. Complete data was available in 114 babies who were assessed as alive at the onset of labor. Thirty-seven were still born and there were 77 live births, their average weight was 486 gm. Twenty-eight babies were offered comfort care, the other 49 babies were offered stabilization/resuscitation from which 20 babies were admitted to the NICU. Four babies, whose average weight was 536gms, survived to discharge. All four survivors have varying degrees of neuro-disability and chronic lung disease. Conclusion: This information may feed into the development of a framework, that supports parents and clinicians. This framework should reflect cultural, religious, and legal aspects applicable to the Middle East whilst providing direction on the care of babies born below the current definitions of viability within the region.



How to cite this article:
Ofoegbu BN, Abdelshafy AM, Simmons PJ. Below the threshold of “Viability” - A middle east experience.J Clin Neonatol 2022;11:202-205


How to cite this URL:
Ofoegbu BN, Abdelshafy AM, Simmons PJ. Below the threshold of “Viability” - A middle east experience. J Clin Neonatol [serial online] 2022 [cited 2022 Dec 4 ];11:202-205
Available from: https://www.jcnonweb.com/text.asp?2022/11/4/202/357817


Full Text



 Introduction



“Do everything” is a phrase we often hear from parents when their babies are admitted to the neonatal intensive care unit (NICU). The decision to offer active support to babies born around the age of viability, or to provide comfort care is a difficult one, especially as “reported” definitions of viability are challenged all the time; a decision to intervene, however, is perhaps additionally more complex in the United Arab Emirates (UAE), where Islam, the local law, and its interpretation and parental expectations are intertwined.

Shared decision-making between the parents of an extremely preterm baby and the neonatal team is a vital step in formulating the management plan before and after delivery. The discussions should be based on local outcome data and the latest available evidence.

At Corniche Hospital, a senior neonatologist attends every delivery from 22 + 0 to 22 + 6 weeks to ensure the baby receives appropriate treatment based on prior discussions and clinical assessment.

In the UAE, withdrawal of intensive care is guided by the governing (religious and medical) authorities; It is only allowed in very limited circumstances, for example, after confirmation of brain death. Neonatal intensive care cannot be withdrawn, even when both staff and parents feel continuing is futile and not in a baby's best interests. This means that the decision to initiate intensive care for babies born at the threshold of viability becomes an even more important decision than in other parts of the world, as one must consider the likelihood of it prolonging a baby's suffering, as once initiated it cannot legally be withdrawn.

 Methods



Retrospective data were collected from June 2011 to December 2020 using electronic hospital records and our in-house neonatal database – a 9½-year period.

Information on all babies born between 22 + 0 to 22 + 6 weeks gestation was sought; intrauterine deaths before the onset of labor and cases where there was insufficient clinical detail to judge gestation were then excluded from further analysis.

The data collated included demographic details as well as birth weight, condition at birth, surfactant administration, initial management, and survival to discharge. Gestational age was calculated from the last menstrual period. Over the study period, administering antenatal steroids was not indicated at these these early gestations. Data on maternal morbidity were not collated – a limitation of this retrospective observational study.

Longer-term follow-up data were obtained, where available, from the shared electronic patient record systems used across the Emirate of Abu Dhabi

 Results



Over a nearly 10-year period, just over 67,000 live births occurred at our center. One hundred and thirty-four babies were born between 22 + 0 and 22 + 6 weeks gestation; 20 babies were excluded as they had died before the onset of labor (9 babies) or there was inadequate clinical information within the medical record (11 babies). Thirty-seven babies were stillborn. Seventy-seven babies were live born of whom 28 babies, following clinical assessment, were offered comfort care in the labor ward. Active resuscitation was initiated in 49 babies following clinical assessment; 20 of these babies were admitted to NICU. Four (each of whom were over 500 g at birth) survived to discharge [Figure 1].{Figure 1}

None of these 114 babies were recognized to have any genetic or structural abnormalities on antenatal scans or on postnatal examination.

The overall survival rate for babies alive at the onset of labor was 3.5% and there were no apparent trends in the proportion of babies who survived to discharge over time [Figure 2].{Figure 2}

Interestingly, these pregnancies were skewed toward being the outcome of assisted conception including in vitro fertilization (41%) and/or were part of multiple pregnancies (45%).

The mean birth weight for all the live born in his cohort was 486 g, whereas that of the survivors was 536 g.

We demonstrate that more babies were offered stabilization over time: 58% of the live born were offered initial active support in the first 5 years compared with 71% more recently. Despite offering more babies initial assessment and support soon after birth, the admission rate to the NICU fell from 50% in the first 5 years to 32% in the second period, perhaps indicating progression to more selective and objective decision-making around NICU admission. At our health-care facility, a senior clinician attends these deliveries.

All four survivors had intraventricular hemorrhage with posthemorrhagic ventricular dilatation and/or dysplastic appearance of the cerebellum; one of the children needed a ventricle-peritoneal shunt. All survivors have seizure disorders and by 12 months, all four children had a diagnosis of spastic cerebral palsy and global developmental delay. One child is documented as walking from the age of 3 years and another is documented as not being ambulant at all by 5 years. They additionally were oxygen dependent due to significant chronic lung disease. Two children were discharged home with home oxygen; the other two were discharged to long-term care facilities that supported long-term ventilation following about 10 months of stay on the NICU. One child had significant retinopathy with a detachment of the right retina despite regular surveillance and treatments with laser and anti-vascular endothelial growth factor. Three children continue to access the government hospital systems for various subspecialty consultations which include replacement of gastrostomy tubes, pulmonology, neurology, and cardiology assessments. One child was lost to follow-up at 12 months as the family returned to their home country.

 Discussion



The cohort being presented in this article is likely to be representative of the wider population of Abu Dhabi Emirate as Corniche is the tertiary referral center for the Emirate, accepting in utero referrals from the private sector.

In the described cohort, the overall survival of babies born alive at 22 weeks was 51.9/1000. Just over two-thirds of the babies received active stabilization from which just under 50% were admitted to the NICU.

It is an emotional challenge for parents and indeed the medical team, who need to be clear about the extent and expectations of stabilization and resuscitation of such tiny babies. Initially, there is a request to “do everything” but as the journey progresses and the unwelcome outcomes become apparent, parents sometimes question and want to be more involved in decision-making; we find that some parents are documented within the electronic medical record, as questioning some of the interventions. There is a need to quantify and document all parents' opinions; this retrospective study is unable to capture such information.

Our current approach is pragmatic and based on prior discussions with parents and assessment of the baby at birth. We recognize that over the past 10 years, the approach to resuscitation may be influenced by physician bias and parental expectations to do everything possible. This is possibly evident from this retrospective study that appears to show that more children were offered stabilization, but fewer children were indeed admitted to NICU over time.

Long-term neurodevelopmental progress of survivors, of babies of all gestations, is difficult to affirm in our environment, as access to follow on care in private long-term facilities or government neurodevelopmental clinics is determined by the level of insurance coverage. The ongoing unification of electronic medical records across private and government medical facilities within the Emirate of Abu Dhabi will assist in the future to monitor the progress of these and other children.

UAE federal laws[1] on “Do Not Resuscitate” and “Allow Natural Death” which allow nonescalation of care are slowly becoming more embedded in clinical practice in Abu Dhabi. This step is an important one – across adults and pediatrics – allowing (inevitable) death to occur naturally. This directly translates to a reduction in the suffering of the patient when continuing treatments are assessed and agreed to be futile. These current laws also allow for the important development of organ transplant programs currently evolving and maturing in the UAE.

In the UAE, the interpreted and practiced law is like other Middle East countries; three consultants sign to confirm that escalation of care is not in the baby's interest; however, the law in the UAE does not allow the removal of the endotracheal tube/life support.

There are fatwas that guide on this delicate matter in other parts of the Gulf[2] but not in the UAE; fatwas are not transferrable between countries.

There is literature from the Middle East that documents the outcome of babies at 23 weeks corrected age as poor with significant neuro-disability.[3] Another article, from the same region, looked at babies <1000 g and noted that when subcategorized by gestation, mortality of 22 weeks was 100%.[4]

We hope this overview will emphasize the urgent need for the development of population databases, across the Middle East, that specifically addresses pregnancy outcome for all gestations but especially for babies at extremes of viability; this may directly lead to the creation of a local framework for the Middle East, similar in its aim (but not necessarily content) with the UK British association of perinatal medicine framework,[5] giving direction to clinicians and offering supportive guidance for families, in these difficult and challenging situations. It would be as important for the Middle East to capture and understand parents' perspectives in a well-designed prospective study that attempts to tease through the cultural, religious, and legal aspects that can be occasionally complexly intertwined.

Acknowledgments

The author would like to thank Dr. Andrew Meeks for his neonatal database from which some of the data were collated.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

References

1Federal Law on Medical Liability (Law No. 4 of 2016) (the 'New Law') UAE Official Gazette on 15 August, 2016. Available from: https://www.dha.gov.ae/Asset%20Library/MarketingAssets/20180611/(E)%20Federal%20Decree%20no.%204%20of%202016.pdf. [Last accessed on 2022 May 22].
2Available from: https://www.tamimi.com/law-update-articles/treatment-patients-end-life-stage-gcc-overview/. [Last accessed on 2022 Jul 01].
3Al Hazzani F, Al Alaiyan S, Jabr MB, Binmanee A, Shaltout M, Al Motairy YM, et al. Decisions and outcome for infants born near the limit of viability. Int J Pediatr Adolesc Med 2021;8:98-101.
4Abolfotouh MA, Al Saif S, Altwaijri WA, Al Rowaily MA. Prospective study of early and late outcomes of extremely low birthweight in Central Saudi Arabia. BMC Pediatr 2018;18:280.
5Perinatal Management of Extreme Preterm Birth before 27 Weeks of Gestation; A BAPM Framework for Practice; 2019. Available from: https://www.bapm.org/resources/80-perinatal-management-of-extreme-preterm-birth-before-27-weeks-of-gestation-2019. [Last accessed on 2022 May 22].