As a neonatologist, I can say that it is wonderful to see the news that the smallest baby at birth is finally going home after 13 months of neonatal intensive care in Singapore.
That duration of treatment tells you a great deal about the level of expertise and the degree of input it takes to get an extremely preterm infant from birth through to going home. It’s genuinely wonderful to read the story but at the same time it is also important to put the story in context, including our Cayman Islands context.
Dr Sara Watkin, Consultant in Neonatal Intensive Care in Cayman
So, I am a consultant neonatologist (as well as paediatrician) and my background was as Chief of Service of the neonatal intensive care unit (NICU) at University College London Hospitals. Had this baby been born in the UK, my centre is exactly the sort of centre where care would have been provided. We had 21 neonatal intensive care/ high dependency cots and my team consisted of 9 other consultant neonatologists besides myself, including some of the foremost researchers in the field, as well as a small army of doctors in training, experienced neonatal nurses, dieticians, technicians and more.
I and my colleagues attended many hundreds of admissions for neonatal intensive care annually and we were constantly faced with 23 to 25 weeks infants i.e. the very smallest and at the margins of viability. I have had many years’ experience in caring for infants around 400g and upwards, including those requiring complex interventions, and so I wanted to put this current story in perspective for us here in the Cayman Islands.
As one last bit of context, in the UK, we were concerned that the perception that these infants can be kept alive ‘easily’ and turn out completely normal was different from the enormity of what they go through and the rarity of outcomes such as these. Consequently, my close friend and colleague at UCLH, Professor Neil Marlow, along with a small group of very senior researchers, led multiple national studies looking at the outcomes of these infants from 22 to 26+6 weeks i.e. almost 27 weeks gestation. I was involved in ensuring that all of the babies in this range in both Nottingham City (where I was Chief of Service for NICU prior to London) and in London were captured and included. I subsequently sat as a member of the Clinical Reference Group for Neonatal Intensive Care in the United Kingdom, advising the UK health system through NHS England on how to apply the findings to the structure and facilities necessary to care for these infants. So, it’s an area I am truly interested in!
You can find out more about my newborn and neonatal intensive care experience here: Dr Sara Watkin, Neonatologist
How well do these babies do after neonatal intensive care?
This baby was 25 weeks and just 212g. That makes her particularly unusual because babies born 25 weeks early are typically around 650 to 750g at birth, meaning she was growth restricted, an added complication. Here in Cayman, I have cared for 23- and 24-week infants, primarily with the aim of stabilising them and getting them to a major centre in the US but sometimes for far longer than ideal due to complications with nationality, visas and insurance coverage. In the US, this baby would have come home with a $5+ million care bill.
Do babies survive at these margins? Yes, it is possible with the right expertise and facilities. It’s an extremely arduous period of care, with many ups and downs, where even small lapses in care quality can have major impacts on the infant. It is tiring as a team. It can be exhausting as an individual and that is one of the reasons we transfer infants out in the Cayman Islands. I remain the only neonatologist in the Cayman Islands that’s properly trained and accredited for neonatal care AND has experience of these tiny infants. I am lucky to be supported by two colleagues, Dr Jasmina Marinova and Dr Sarah Newton, who also have neonatal training, including from major centres and that really helps when we are caring for very preterm infants. However, it cannot be underestimated what it takes.
In UCLH, we also had a constant supply of neonatal nurses qualified in caring for these extremely preterm infants. In the Cayman Islands, I have worked with some really excellent nurses but we just cannot support a sufficient supply of nurses with that experience to run a full rota and caring for these infants is a 24-7 job for, in this case, 13 straight months. Given what I said before about ‘one small lapse’, obviously having the nursing supplemented by midwives and paediatric nurses (and we have excellent ones here) is a risk to the infants and very stressful for the staff themselves.
So, how do they do?
In the UK, with the benefit of major centres and experienced teams, the outcomes in 2006 (when the national cohort study was done) were:
- 2% (n=3) for those born at 22 weeks’ gestation
- 19% (n=66) at 23 weeks
- 40% (n=178) at 24 weeks
- 66% (n=346) at 25 weeks
- 77% (n=448) at 26 weeks
Beyond just survival
Survival is only part of the story. This infant has gone home still with a complication called chronic lung disease, needing breathing support e.g. home oxygen. I have cared for babies here who have gone home in such a manner too (and then continued to improve until they don’t need it). I love seeing them back in my clinic. It’s a huge pleasure and sense of satisfaction and you develop a very close relationship with the parents as you are truly part of each other’s lives for a long time!
In the UK, infants in the above cohort (which was EVERY baby in the UK in that year), at discharge from hospital, 68% (n=705) of survivors had bronchopulmonary dysplasia (receiving supplemental oxygen at 36 weeks postmenstrual age), 13% (n=135) had evidence of serious abnormality on cerebral ultrasonography (brain injury), and 16% (n=166) had laser treatment for retinopathy of prematurity, a condition that can result in blindness.
So, the above helps us understand the mountain this little girl has climbed to be going home at all. She will likely have life-long health issues with her lungs, for instance, and will need additional support with learning and other aspects of development. However, her parents also have her, and the odds, the costs and the ongoing consequences are worth every moment for some and a bridge too far for others. These considerations are some of the more difficult ones we also have to face in a medical and life journey such as this.
It’s in my DNA to do what I can, even if we can’t send a baby to a major centre, but I am also very honest and open with my parents about what we might go through and the real issues, chances and implications of this. I have provided care when insurance runs out (it’s a real issue for those on SHIC plans and the care here is a 10th of the US cost) and I have advocated for keeping infants here when their insurance only supports going somewhere without our level of expertise (it’s unusual for a small island to have someone with my background). I am passionate about neonatal intensive care and the constant never-ending attention to the little details that helps produce health babies at the end of it. Most of all, I love getting the photos and messages about little ones growing up healthily into bigger ones, for instance the one I get reliably every Christmas from Mum not even here now. It makes the effort worth every moment.