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Personal reflections on the breastfeeding experiences of mothers whose babies are born with major he

Posted Saturday 7th August 2021

Professor Marlene Sinclair

Head of the Maternal, Fetal and Infant Research Centre at Ulster University

Founder and President of the Doctoral Midwifery Research Society

As I read the key messages for WBW2021 last week, the word that anchored itself in my psyche was ‘precious’. Breastfeeding is a behaviour that is indeed precious and as such requires protection in legislation, encapsulation in the professional’s armour and endorsement by the public.

As a midwife and a researcher in the field of breastfeeding for almost 20 years, I learn something new from every study we undertake. This week you have heard doctoral researchers from Ulster University as they let the spotlight shine on their contributions to breastfeeding research. Research from Northern Ireland, the UK and Jordan has been posted and one of our former doctoral students (now a newly qualified midwife) has shared her passion for supporting mothers to breastfeed. For my part, I would like to share some very personal thoughts on my recent experience of listening to mothers who have babies born with serious heart defects requiring surgery. I had no in-depth understanding of the complexity involved in decision making for breastfeeding mothers and health professionals caring for newborns with major cardiac issues, requiring surgical intervention and frankly speaking, I felt the decision was the mothers. However, I knew it was an uncomfortable research question to explore with some academics based on our previous research experience in ConnectEpeople. Therefore, I would like to shine the final spotlight for this WBW on the lived experience of the mothers and the health professionals: caring for newborns with major heart conditions requiring surgery.

For me, breastfeeding is a precious pearl and when you find something precious it is natural and essential to want to protect it. However, in protecting breastfeeding, we must be wary of the overzealous behaviours of those converted and almost strapped to slogans that breast is best and only breastmilk will suffice! The danger here is the alienation of mothers who know and understand the optimal goal standard for breastfeeding but cannot achieve it. They cannot attain their breastfeeding goal because their baby has a physiological condition such as severe cardiac disease requiring early surgery. These mothers are unique, and they need to learn to share the decision making with the professional team. The two-legged race sums it up for me, as the mother and the professional need to learn to walk together towards the goal of safe and timely surgery; making decisions that require knowledge, truth, trust and emotional sensitivity, without which, they will not succeed. I have listened to mothers describe their early breastfeeding experience with their newborn and it seems to me it is like learning to dance. The behaviour is planned, mum and baby start skin to skin, cheek to breast, learning new moves together, and practicing successful latches. Advice and guidance from experts is warmly welcomed and eagerly sought to help and guide the waltzing of new skills. The suffering and exhaustion are expected but soon forgotten when one reaches the oasis of sleeping and the routine of the performance becomes embedded and accepted as the new norm. As practice continues, the steps becomes more familiar. However, one day the alarm goes off and one jumps when their baby has a serious cardiac condition that has now moved at pace and surgery becomes necessary. Here, the focus shifts from optimal to essential or lifesaving care. Weight gain in the baby is a major focus for the medical team preparing for surgery and this can become a challenge for all concerned. In most cases, the impact is instant and the dance routine is replaced with a race to the operating theatre. The breastfeeding world of the mother and baby changes instantly and bottle feeding breastmilk or tube feeding breastmilk can often become the next goal. How long this can be sustained is not an issue but the weight of the baby and the speed at which the baby needs to gain weight is the key factor for the maternal and professional dyad. For many, supplementary feeding may also have to be introduced. The focus has to be balancing the needs of their baby with their ideal breastfeeding goal. This can require considerable discussion, evidence review and risk assessment. It is complex and failure to listen, monitor and react to the mother can lead to cracks in her psychological wellbeing. Failure to listen and act on medical advice can lead to delays in surgery and potential morbidity for the baby.

In closing, it is absolutely essential to leave you with a clear message about the knowledge and sensitivity of the multiprofessional team dealing with breastfeeding issues when facing a major life and death situation. Respect for the mother and her baby and an acute awareness of the psychological and nutritional benefits of breastfeeding are evident at every stage of the decision-making process. However, we have limited knowledge on shared decision making in this specific area and further research is necessary. Hopefully, some of you may be inspired to research in this field!


1. Sinclair, M., McCullough, J.E., Elliott, D., Latos-Bielenska, A., Braz, P., Cavero-Carbonell, C., Jamry-Dziurla, A., Santos, A.J. and Páramo-Rodríguez, L., (2019). Exploring research priorities of parents who have children with down syndrome, cleft lip with or without cleft palate, congenital heart defects, or spina bifida using ConnectEpeople: a social media coproduction research study. Journal of medical Internet research, 21(11), p.e15847.


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