Shock, trauma, grief, vulnerability, worry – these are just a few words to describe how parents of preterm born babies feel when faced with the often unexpected situation of the early birth of their child. Add to this the need to make sometimes urgent decisions about the future of an early term baby – and this often does not make for fluid and smooth communication between parents and the medical professionals in charge of the care of their baby. Such communication was the focus of an online session on 6 May as part of the MProve Academy.
The MProve Academy was set up by Dr. Alok Sharma and the aim of the academy is to improve neonatal care using a multidisciplinary approach that reaches across countries globally. A guiding principle of the academy is the development of first-class neonatal care whilst maintaining respect for different cultural approaches. For more information please see: https://www.mproveacademy.com/
The online session on 6 May was part of a module on Ethics. The focus of the session was on communication issues around Limits of Viability between parents and medical professionals and specifically, to present the professionals attending with lived experiences of parents in difficult or challenging circumstances. The session hosted approximately 60 participants including medical professionals (clinicians, nurses) from Belgium, India, Spain, UK, UAE, Nigeria and South Africa. The ultimate goal was to break down and analyse the barriers between parents and medical professionals in these situations. Professor Dominic Wilkinson, Director of Medical Ethics from the Oxford Uehiro Centre, provided an introduction on the topic of the spectrum of decision-making based on each situation. Generally, an open, humane approach to every family is encouraged. Three parent representatives from the EFCNI network provided real life experiences to the professionals present. Livia Nagy focused on the unexpected birth of her son in Hungary and the limited information provided by staff on her son’s condition. Marni Parnas spoke about the preterm birth of her twins in Canada and the difficult realisation that one twin would not survive. Finally, Mandy Daly presented her experience before the birth of her daughter in Ireland and the guidance that she felt was missing.
The professionals present were very engaged in the session and posed many questions to the participants and expressed dismay at some of the parents’ testimonies. The commitment to improve parents’ experience in the NICU was clear and it was agreed by all that one of the most important things that professionals can do is get to know each family and their individual circumstances.