1. Mothers and Babies Should Be Together. Carol Bartle NUMB Launch Hamilton, New Zealand April 2005

2. Neonatal Intensive Care in the 1970s Increased understanding of neonatal diseases and better technology Development of neonatal intensive care units Improved survival rates Parents as passive observers Carol Bartle April 2005

3. NICUs in the 1980s Studies showing the importance of parental involvement and participation appeared. Gradual changes to try and take account of the emotional support of parents Carol Bartle April 2005

4. NICUs 1990s Family Centred Care models – adaptation uneven and site dependent Rooming in facilities for NICU mothers variable and resources variable depending on site of care Qualitative research studies appeared on mothering experiences within NICUs Kangaroo Mother Care promotion. Uneven adaptation and site dependent. Token KMC more likely to be implemented. Carol Bartle April 2005

5. NICUs in the year 2000 and beyond… More modern NICUs have been developed to take account of the needs of families. This has generally involved providing a limited number of rooming- in beds for mothers with babies in the NICU. The welcome development of rooming in in N.Z. NICUS has not yet progressed into the ultimate in family care which is single room NICUs with family rooming in facilities. These single room NICUs have been developed in the U.S. Carol Bartle April 2005

6. Neonatal Intensive Care Future NICU development needs to take into account the wishes of mothers and families who wish to stay with their preterm and unwell babies. Research indicates that babies do better when their mothers are with them. The environment needs to be designed to meet the needs of staff working in the NICU also. Parent needs and staff needs can be compatible. Carol Bartle April 2005

7. What Parents Need… Reassurance that the care is excellent and trust in the NICU staff Being close to the baby. NICUs facilitating not blocking mother/baby/family togetherness Information. Regular updates, primary nursing, personalised and not prescriptive advice, access to medical and nursing staff Comfort and support. Facilities such as kitchens laundries and sibling care services. Support services. Parent liaison staff Carol Bartle April 2005

8. Neonatal Intensive Care needs… Single room NICUs for all others who wish to and/or are able to stay Privacy for families Communal family lounge for parents to meet Sibling Care programmes and child care on site and close to the NICU Breastfeeding rooms Library, video and internet access Carol Bartle April 2005

9. The Humane Neonatal care Initiative ( Professor Adik Levin, Tallin Childrens Hospital, Estonia) Facilitating maximum contact of mother and baby Minimum contact between babies and staff Reducing psychological stress in mothers Maintaining the psychological umbilical cord Rooming in 24 hours a day –Tallin policy introduced in 1994 Humane rights of the baby are not only to be surrounded by highly qualified medical staff and good apparatus but also to be with his or her mother and father as well Carol Bartle April 2005

10. Being Thoughtful and Careful… (Priday 2003) Never have I encountered doctors, nurses or midwives who wished to cause discomfort for mothers: all believe their practices are essential for the most beneficial outcomes for mothers and babies (Beverley Chalmers 1997). The scientific and technological NICU requires a complimentary culture of caring for parents to add a much needed psychosocial element. Keeping mothers and babies together provides a scaffold for vulnerable babies and supports the vulnerable family within this environment. Carol Bartle April 2005

11. Kyra Marie Landzelius., Culture, Medicine and Psychiatry, 2003(27). 32 months of observations, interviews and informal conversations with 124 mothers in a NICU Fragment from an interview This baby is the centre of my being, everywhere I go, everything I do, when Im waking, dressing, eating, whatever, it doesnt matter, hes with me, in my thoughts, in my heart, hey he is my heart, hes in here (mother taps her chest). Carol Bartle April 2005

12. Comments from Mothers One common symptom emerged in mothers accounts in Landzelius. Anxieties about bonding with their NICU babies. Comments included : Hindered contact, Prevented togetherness, Inhibited expression, Stole their intimacy. Broeder (2003). Challenges for mothers were identified. Trying to remain connected with their babies and getting to know their babies when nurses were the primary caregivers. Carol Bartle April 2005

13. Nystron & Axelsson., 2002 Separation from the baby caused emotional strain and anxiety (study involved full term infants in the NICU for between 2-10 days) Mothers felt like outsiders. Despair, homelessness, powerlessness, disappointment Despair was prominent Anxiety that babies would be harmed by the separation All mothers expressed a desire for closeness with their babies and joy was inspired by moments of contact Carol Bartle April 2005

14. Other Research: How mothers survive… Learning and Playing the Game. Watching, listening, being polite, remaining pleasant, holding ones tongue, not stepping on toes, not complaining, not using bad words, making sacrifices, jumping through hoops (Fenwick, Barclay & Schmied 2002) Stainton et al., (2001) found that involving parents in the care of their baby was the most uneven staff adaptation in their NICU project to evolve a developmental care culture. Carol Bartle April 2005

15. More Research… Loss of parental role is the major stressor for parents in the NICU (Holditch-Davis & Miles, 2000; Spencer, 2003) Mother-baby separation was the most stressful issue (Affonso, Hurst, Mayberry, et al.,1992; Miles, Wilson & Docherty, 1999) Separation from the baby was the worst feature (Redshaw & Harris, 1995) Carol Bartle April 2005

16. Separation and Stress (Kanitz et al., 2004) Stress in the form of intermittent maternal deprivation produces persistent changes in physiology and behaviour in rats and monkeys. It is well known in studies of rodents and monkeys that isolated infants become progressively lethargic and show rather passive patterns of behaviour (mental despair/stress induced sickness -often considered an animal model for human depression) In the human, early life experience may modulate stress responses and coping mechanisms, with long term implications for emotional health and cognitive function Piglets exposed to intermittent maternal contact showed a significant decrease in locomotion, increased inactivity and decreased reactivity patterns. Carol Bartle April 2005

17. The Effects of Stress Fear Exhaustion Vulnerability Role conflicts Depression, anxiety, PTSD Communication problems – parents, parents/staff. Vigilance and hypersensitivity Compromised immune system Increased problems with expressing breastmilk and breastfeeding Carol Bartle April 2005

18. Womens Words (Bartle 2005) Well every time your milk drops you look at it and go, Oh my God Im failing, because you cant really be a mum up here, it sort of compounds it I suppose and you do feel like youre just hopeless really… You can just detach yourself from this place completely when you go home. I dont have babies, I could pretend that I dont have them sort of thing. It makes you worry. I mean Im their mum and I dont care whether Im here or not. It theyre stuck in here and youre not allowed to have cuddles or anything you might as well be at home. Carol Bartle April 2005

19. Womens Words (Bartle 2005) Its hard coming up here all the time you know three or four times a day and then to sit down on a chair and think, Mmm, Ive got nothing to do except watch a baby sleep you know, you think well this was a wasted visit. They told me I had to put her back. She needed to go back and have a rest or something but we were both having a sleep. Well I thought that they grow when they are asleep and it would be just like when they were inside wouldnt it? Carol Bartle April 2005

20. Womens Words (Bartle 2005) I dont know if he [baby] knew who I was you know. I was just there feeding him along with other people doing things to him. Theres the thing that someone has assumed ownership of your baby and they assume that you dont have your babys best interests at heart which is bizarre really. Carol Bartle April 2005

21. Contact: The Missing Piece of the NICU Care Jigsaw? Facilitates empowerment of the mother and baby Meets maternal needs- giving pleasure, reducing anxiety, depression and fatigue. Positive spin offs for the family More breastfeeding opportunities - less restricted, robust breastmilk supplies More responsive, less stressed babies Learning the early baby cues and being supported to use them rather than a total reliance on clock watching Knowing your baby and knowing how important you are to your baby Resting with your baby - as opposed to being sent home for a rest and then worrying about your baby and NOT resting! Carol Bartle April 2005

22. Kangaroo Mother Care Kangaroo Mother Care returns the baby back to the maternal environment Incorporates the benefits of touch, maternal sounds and visualising the maternal face. Also adds the rhythm of the mothers breathing. All important for neurological development Provides a shield AGAINST over-stimulation KMC can reduce depression and increases mothering confidence, competence, and connectedness (Oxytocin) Parental, lactational, developmental, physiological benefits Carol Bartle April 2005

23. Individual Rooms in the NICU: An Evolving Concept (Dr R White) Appropriate environmental stimuli for each baby Increased privacy and accessibility for families Designs considerate of staff support issues. The greatest resistance to the single room NICU is based on the perception that it would require more staff because they could not observe all neonates at all times. It is imperative that the single room NICU use communication technology to mitigate the perceived need for more staff (Nareesh Mathur) Carol Bartle April 2005

24. Mothers Arms – the past and future locus of neonatal care? (Dr R White 2004) With the advent of neonatal intensive care medical professionals inserted themselves between the baby and its family Family-centred care restored the familys right to full access to their baby but medical professionals still view the infant as a solitary individual who sleeps most of the time in a bed. Carol Bartle April 2005

25. Mothers Arms – the past and future locus of neonatal care? (Dr R White 2004) Future NICU design should recognise that the baby must spend most of its time in its mothers arms to get the full benefit of her sensory environment NICUs must therefore be planned to facilitate this extended proximity as much as possible (i.e. not just providing for parents at the bedside with the bed as the locus of care but transforming the predominant locus of care from the bed to the parents arms) Carol Bartle April 2005

26. Mothers Arms – the past and future locus of neonatal care? (Dr R White 2004) Designing our units to facilitate this interaction will not assure that it will always occur but it will guarantee that we have not created permanent structural features that interfere with this crucial relationship. Clinics in Perinatology 2004, June; 31(2),383397. Carol Bartle April 2005

27. Acknowledgments from Carol Bartle Canterbury Medical Research Foundation for research funding The women who participated in my research My thesis supervisors Dr Kath Ryan & Dr Judith Duncan. University of Otago, Dunedin, New Zealand. La Leche League New Zealand for all their support Ongoing support and inspiration from my friends Rea Daellenbach & Carol Thomas The women involved in NUMB, particularly Donna Booth, for continued enlightenment. Carol Bartle April 2005