Every year, worldwide, approximately 15 million babies are born premature. In Australia alone the number is more than 27,000.
While giving birth to a child is generally a positive, joyous experience, having a baby born prematurely and admitted to a neonatal unit can result in significant trauma for families and additional stress on health care systems.
A team of international researchers, hoping to understand this better, recently explored the experience of premature birth, during the Covid-19 pandemic, via Twitter.
The team, including Dr Kathy McKay from the University of Liverpool in the United Kingdom and Dr Sarah Wayland from the University of New England in Australia, analysed 3161 tweets between 24 October 2020 and 30 November 2020 to learn more about the narrative around premature babies in Neonatal Intensive Care Units (NICU) in real time.
“Tweets are a useful way to gain real-time insights into stressful and emotionally charged experiences as they do not take long to craft and can be written spontaneously at the tweeter’s convenience. Further, the global nature of Twitter means that a person’s story can be shared across time zones and countries, which can lend strength to voices that may otherwise not be heard,” Dr McKay explained.
“The timing of the study was also important. World Prematurity Day is annually celebrated on 17 November to raise awareness on the complexities surrounding premature birth.”
“By analysing tweets around World Prematurity Day and during pandemic-related restrictions we gained understanding of the additional stresses that resulted because of the pandemic as well as the ‘everyday’ experiences of having a child in NICU.”
A birth is labelled premature if the gestation period is less than 37 weeks. It is a common occurrence, affecting about one in 10 live births. The average stay for these infants in NICU in the UK is seven days but can be much longer depending on factors such as health, birthweight and gestational age at birth. These infants invariably have a very different start to life compared to babies who are immediately discharged into the care of their parents.
The study paints a stark picture of the complex challenges faced by parents, healthcare workers and the babies they care for. The pandemic further complicated an already difficult situation with tensions between the requirement for infection control to protect the safety and survival of infants and the wish to promote infant wellbeing through parental contact amplified.
“Our research highlighted a Covid-19 ‘baby blind spot’ where the needs of these vulnerable infants and their parents were often neglected. This is concerning given that they already face so many challenges,” Dr McKay said.
The team hope that their findings will result in a greater understanding of the lived experiences of preterm birth and the additional impact of the COVID-19 pandemic and that improved understanding will inform better support for families, babies, and the healthcare workers involved in their care.
Their findings, grouped according to three themes, are summarised below:
Covid-19 was not the only trauma
“Having a new baby admitted to a neonatal unit often triggers extreme stress and anxiety for parents with feelings of guilt, distress, depression and disconnect,” Dr Wayland said.
Before the pandemic few NICU units offered parents the option of staying with the babies. The pandemic introduced new rules that restricted parents’ access to reduce the risk of infection for staff and patients. Although some parents reported satisfaction with the restrictions others found them deeply distressing.
“Access restrictions impacted the number of times parents could visit, the time available to bond with babies, breastfeeding and participating in their care. Parents couldn’t freely offer ‘kangaroo care’ which is so important for the maturation of the autonomous nervous system. Unfortunately, understanding the need for these restrictions didn’t necessarily mitigate the distress they caused.”
Emotional tweets highlighted parents’ helplessness and feelings of being let down by the system with one tweeting “This will affect us all for years to come.”
Healthcare workers, especially nurses spoke about safety concerns, and hyper awareness of possible symptoms: “Keep being told about newborns coughing/sneezing once or twice in #NICU on report these days. Me thinks that it always was this way but #COVID19 has us all a little hypervigilant! To swab or not to swab. That is the question!”
Raising awareness
Both parents and healthcare workers raised awareness around premature birth and the long-term impact on parents and children. Some tweets suggested that the number of premature births may have decreased during the pandemic. These tweets gained traction as they suggested that better understanding of prematurity might help to provide better prevention and care.
“Did lockdowns lower premature births? Dutch researchers say the “impact was real, adding to hopes that doctors will learn more about factors contributing to preterm birth. #prematurebabies #preterm #birth #lockdown”
Alongside sharing information about the impacts of COVID-19, parents and healthcare professionals also shared their experiences of being in the NICU as a way to illustrate the different types of support that might be needed. Support such as inclusion, the need to considered parents as partners and that fathers should not be forgotten.
“The National Health System here in the UK has taken a strong stance on the role of parents,” Dr McKay said. “They are of the opinion that quality neonatal care actively involves both parents in the care of the baby.”
Tweets from adults who were born prematurely offered hope to parents providing a glimpse of what the future may hold.
When Shannon Sullivan learned she had spent the first 3 months of her life in Cedars-Sinai’s #NICU, she decided to dedicate her career to helping infants. “#Neonatology saved my life, and I need to pay it forward,”
Baby milestones
Positive milestones were celebrated by both parents and healthcare professionals during the time of the study.
“These tweets highlighted that even with so much of the outside world changed for the adults around them, the milestones these babies achieved remained precious for everyone in the NICU,” Dr Wayland said.
“NICU Milestones: The First Diaper Change was the Hug I’d Been Waiting For #NICU” and
“I love when one of my #preemie #patients does so well at their check up that doctors use the terms #biggirl #heavy and #smart #childlife #infantmassage #support #coping #NICU #premature #allcaughtup.”
