4TH YEAR TRANSACTIONAL ANALYSIS TRAINING
MANCHESTER INSTITUTE FOR PSYCHOTHERAPY
The lived experience of making a connection with a premature baby.
Of the (approximately) 730,000 live births in England and Wales every year, around 7 percent of these (over 50,000) are pre-term, born between 24 and 36 weeks gestation. Of this 7 percent, the vast majority (83.8%) are born between 32 and 36 weeks gestation, 11.2% are born between 28 and 31 weeks, and only 5% (approx. 2500) are born between 24 and 27 weeks gestation, and are considered to be extremely pre-term. (Office for National Statistics, 2011/2012).
Joanne, a close friend of mine, had such a baby, extremely pre-term, born at 25 weeks gestation. I met Joanne when our eldest daughters started school together, and her pre-term daughter Lily was around a year old. Although I was aware that Lily had some health difficulties I was unaware of the extent of these, and the trauma and impact that her birth had had on Joanne and their family. As our relationship grew Joanne began to share more of her story. As most mothers do, we had many conversations about our experiences of birth and life with young children. In one such conversation Joanne revealed that she had not had any physical contact with Lily until she was 10 days old. Lily was in a completely covered incubator, connected to numerous machines, fully ventilated, with tubes and wires almost completely covering her. Being born extremely prematurely meant that the risk of infection was high and needed to be minimised to increase her chances of survival. I had an awareness, through the birth of my own 2 children, of the importance placed on early skin-to-skin contact, and some understanding of how this impacts the bonding process between mother and child. I was intrigued at how a mother begins to make that connection with her baby under such unusual and difficult circumstances.
As part of my 4 year training course to become a transactional analyst psychotherapist, I am required to undertake a piece of qualitative research exploring lived experience. I took this opportunity to find out more about Joanne’s experience, in particular how she was able to make that connection with Lily, which I knew existed through observation as I spent time with them together. The aim of this research is to explore the lived experience of making a connection with a premature baby.
There is a vast body of literature and research concerned with premature/pre-term babies. It is largely quantitative and concentrated on the medical impact of prematurity – how a baby is physically and mentally impacted; causes of pre-term births, and how they can be minimised or prevented; and drugs and other medical measures which can increase chances of survival or aid the development of premature babies.
However, there is increasing interest in the impact that having a premature baby has on the mother’s psychological health, and also on issues such as attachment. Encouragingly this has led to research which is concerned with how medical staff and other professionals can help mothers, and also how the environment of the neonatal intensive care unit (NICU) influences this process.
I have found several research papers that focus on the mother’s experience of having a premature baby. Unfortunately I have only been able to access the abstracts of these papers, however their aim, scope and findings are still clear. One such study by Niven et al. (1993) – Attachment (bonding) in mothers of pre-term babies, focuses on the experience of 30 mothers who had experienced a pre-term birth and aftercare in the neo-natal unit. The aim of this study was to ascertain the effect that this has on maternal attachment during pregnancy and post-birth. They found that “the majority of mothers experienced difficulties in attachment throughout the babies’ stay in hospital, especially in the immediate postnatal period.” However the large majority of these mothers were able to experience maternal attachment once their baby had returned home, and the difficulties they experienced were “apparently completely resolved”. They uncovered some of the emotional difficulties that these mothers faced and determined that “Factors which were related to attachment difficulties included shock, fears about the babies’ survival and previous reproductive problems. Subjects also articulated feelings of guilt and of loss and a sense that the baby was not really theirs.”
This sense that the baby did not belong to them was found to be a key theme in a similar study undertaken by Heermann et al. (2005) – Mothers in The NICU: outsider to partner. They interviewed 15 mothers and focussed on their journey of “becoming a mother”. They identified 4 areas which feature in their journey toward “engaged parenting”, as (1) focus: from NICU to baby; (2) ownership: from their baby to my baby; (3) caregiving: from passive to active; and (4) voice: from silence to advocacy. The aim of this study was to understand the mothers’ experiences in order to aid the health professionals in the implementation of “family-focussed” neonatal intensive care units.
Jackson et al. (2003) also concentrated on experiences of parenthood in their research – From alienation to familiarity: experiences of mothers and fathers of preterm infants. Their study of 7 sets of parents includes the fathers’ experiences of parenting a preterm baby, and highlights the similarities and differences between the mothers and the fathers’ views on this process. They identified four areas of experiences in relation to parenthood – “alienation, responsibility, confidence and familiarity”.
In 2008, Aagaard and Hall, brought together 14 such studies in – Mothers’ Experiences of Having a Preterm Infant in the Neonatal Care Unit: A Meta-Synthesis. They discovered five key themes which emerge from these research studies,
- the mother-baby relationship (from their baby to my baby)
- maternal development (a striving to be a real normal mother)
- the turbulent neonatal environment (from foreground to background)
- maternal caregiving and role reclaiming strategies (from silent vigilance to advocacy)
- mother-nurse relationship (from continuously answering questions through chatting to sharing of knowledge)
It is my hope that this research project will add to and support the growing body of work in this sensitive and relevant field.
For this project I used a relational-centred phenomenological research design. Phenomenological research focusses on describing “the lived world of everyday experience.” (Finlay, 2011: p.10). In relational-centred phenomenological research the research is seen to be influenced by both the researcher (their interests; their own history; how and which questions are asked; how they are impacted by the answers etc.) and the co-researcher (how much and what they choose to share with that particular researcher; how the impact on the researcher affects their own feelings and understanding of the experience, and so on).
“data is seen as emerging out of the researcher and co-researcher relationship and as being co-created (at least in part) in the embodied dialogical encounter” (Finlay, 2011: p.159).
My co-researcher on this project is Joanne. She is 39 years old, white, middle-classed, married to Paul and mother to two daughters, Holly and Lily. Although Lily was born at 25 weeks gestation, she is now a perfectly healthy and happy 5 year old, with no physical or mental disabilities.
Joanne agreed to share and explore her experience in an unstructured in-depth interview which lasted approximately 1 hour 30 minutes. I adopted a simplified variant of the phenomenological analysis method developed by Wertz (1983) as described by Linda Finlay in the research project guidelines. I transcribed the interview and spent time dwelling on this data which enabled me to empathise with Joanne’s story and to really get a feel for her lived experience. I began to focus on meanings that were both explicit and implicit in the data, and with further reflection I was then able to discern the key themes which stood out for me – From Disconnection to Connection; Guilt and Regret; and Shame: the Private Self and the Public Self. I have presented this thematic analysis in a narrative style in order to better illustrate Joanne’s transformative journey.
As Joanne is a close friend I am in the fortunate position of having an understanding of her character. I know that Joanne has a strong Adult ego-state and is very grounded. She also has a strong support system around her, including her husband. I was aware that as a friend I already have some knowledge of Joanne’s personal experience, so needed to be aware that I bracketed off as much as possible my prior knowledge, preconceptions and expectations. I was also aware that although our friendship may help us to uncover more depth in the interview, that it was important that I respect boundaries and stick to the focus of my research question.
Prior to the interview Joanne and I had a meeting where we discussed the focus of the research project, and the process it would take. We agreed that she would be most comfortable in her own home and arranged a time which ensured that we were not disturbed. I explained that the interview could possibly be emotive and may uncover thoughts or feelings which had not been explored previously. I also made sure that she knew that she could refuse to answer any questions that she was uncomfortable with and could stop the interview at any time, or even withdraw from the process if she wished. I offered to pay for a session with a psychotherapist after the interview, however as yet Joanne has not felt the need for this. I also made it clear that the transcript of our interview and the completed project would be shared with my course tutors and possibly published at a later date, but that her personal details would remain strictly confidential. At this stage in the process Joanne feels happy to use her own name, although if this research is published at a later date I will give the option again of using a pseudonym. Joanne preferred not to read the transcript after the interview and to remain removed from the process of analysis. She has reported that the process of the interview was cathartic in itself, and gave her a sense of release.
From Disconnection to Connection
Right from the start there was a disconnection between Joanne and the baby. Her focus was on the process of the pregnancy itself, rather than the life that was growing inside her. She was in enormous pain and discomfort and was practically bed-ridden from about 13 weeks. She was plagued by negative thoughts and feelings, frequently telling herself “there is not going to be a good outcome of this pregnancy”. Her world began to shrink as she began to disconnect from her normal life and became increasingly isolated from the outside world. She rarely left the house because of the pain she was in, and didn’t tell anyone that she was pregnant because she didn’t believe that this pregnancy would result in a child. Her life became a seemingly endless struggle, filled with frequent hospital visits and attempts to look after her 3 year old daughter. Time seemed to stand still and yet also became her focus and motivation, “it was like you just lived to cross a week off”. Although at the same time she felt that she was simply delaying the inevitable miscarriage.
As the pregnancy progressed the doctors at the hospital became more encouraging and hopeful, which opened up a whole new world of fear and negativity for Joanne.
“it got to a point where I’m delaying it and then as the more it goes on it turns into a different situation, and obviously the hospital were like talking to me about, they would say ‘you know, you just need to get to 24 weeks, just get you to 24 weeks and you know there’s so much we can do’. Whereas I weren’t happy with that. In my head I didn’t want to go down that route, because to me it didn’t feel right”
Joanne became further disconnected from the baby as the reality of the situation began to dawn on her. She started to feel that the pregnancy (and the baby) was wrong and unnatural, and that “it wasn’t meant to be”. I get a sense that she felt like she was being drawn into a terrible situation, an unwelcome new life for herself and her family. She began to dwell on what she longed for from a normal pregnancy and birth, and fantasised about her ideal birth plan as it became clear that this was more and more unlikely – “I wanted like a music tape, and I wanted to sit on the ball and you know I didn’t want any drugs and everything”.
The sense of despair and reluctance to enter this new world intensified on the day Lily was born. After her contractions had started she reported feeling,
“I sort of like knew they would try and delay it, and I think deep down I didn’t, I just wanted it over… I don’t want this, this isn’t the world that I want to…”
Once in the hospital she became even more disconnected from the world around her, and also disconnected from her own body. She appeared to surrender to the medical staff and was swept along as it all seemed to happen around her, “I was just there, letting them do whatever they wanted to do… it was like another world, in that I wasn’t there and it wasn’t registering”.
Lily was born weighing 1lb 12oz with a heartbeat, and “whisked off”. Time again had little meaning for her – she was given some drugs “because I was a bit upset about everything” and thinks she may have slept, and sometime later was told that she could go down to the high dependency special care unit to see Lily. This was the last thing that Joanne wanted to do. Lily didn’t feel like her baby, she hadn’t connected to her at all during pregnancy, she didn’t have a bump that she could rub or sing to, and had always expected that “she’ll not make it”. Also, the very act of seeing her would highlight the reality of the unwanted new world that she had been drawn into, and desperately wanted to run away from.
The environment that she found herself in was terrifying and alien.
“then I just went into this room, this massive room, you know long lights, so bright… lots of babies in incubators, and obviously parents there, and beeping that was just like piercing, so obviously all the equipment, and just all these alarms going off and lots of nurses… just very, very clinical and horrible.”
She was taken to where Lily was and was overcome with how unnatural and wrong it all seemed. She couldn’t see Lily as a baby, let alone her baby, and was struck by the fact that it was all so medical, that she wouldn’t be alive at all if it wasn’t for all the equipment. This was not the world that she wanted to be a part of.
“ to me she just didn’t look like a baby, and I was just looking at her, and couldn’t really see her with all the equipment and everything…and she was being ventilated so she was having 100% support…and I just sat there looking at her and I said to Paul ‘this isn’t right, I don’t want this’”
The doctor told them in a “very matter of fact” way that the chances of survival were slim, and that if she did survive there was a very high chance that she would have some form of disability. At this point Joanne felt lonely and isolated. She felt ashamed for feeling the way she did, and distanced herself from the other mums around her as she felt that she alone was feeling this way. She has to sleep in the maternity ward for the first couple of nights, which highlighted the contrast of the world that she longed to be part of, and the unwanted reality that she found herself in and refused to connect to. She “just wanted to go home”. I get a sense that ‘home’ meant so much more than the mere physical building, but also encompassed her old self, her old world, before she was drawn into this unstoppable, undesirable, ever-changing alien landscape unfolding before her.
Joanne was physically disconnected from Lily as she was unable to touch her because of all the equipment and the possibility of infection. Lily was in a completely enclosed incubator which had two arm holes through which the nurses would take blood samples and do other tests. Although the nurses explained what the machines were doing and what the alarms and the test results meant, “nothing registered”. It was as if she was in a bubble, completely disconnected from Lily and the world around her, “just sat there, could do nothing”. She was disconnected from the present and instead lived in a world consumed by the future – negative images of what her new life would be like, how would they cope, where would they live.
After a couple of days she was asked to start expressing milk, but because of the lack of connection this proved almost impossible. She didn’t get the normal let-down feeling and so was in a lot of pain. A nurse gave her a picture of Lily in the hope that it would help the process, but Joanne had a strong desire not to look at the picture.
“I don’t want to look at that picture of Lily because I didn’t look at it and think ‘oh, my Lily’, which was what she was saying would help me. I was so angry inside because I was thinking ‘I don’t want to look at that picture because I just don’t see a happy thought, I don’t think a happy thought when I look at that picture and I just want this over, I just want to get out of this place.’”
Joanne’s disconnection from Lily meant that she left everything to the nurses and wanted very little to do with Lily. The nurses asked Joanne if she’d like to help with ‘the cares’, which are the daily tasks of washing the baby with cotton wool, “which I could never bring myself to do because I couldn’t bring myself to touch her”.
Lily made enormous progress in the following days, coming off the ventilator and moving onto a CPAP machine. Many premature babies don’t make this transition for months, but Joanne “couldn’t get excited about the little bits of progress that were being made” as she was immersed in her bubble and consumed with negative thoughts about the future for her and her family. Despite this progress Lily was still considered very high risk, and was extremely unsettled for the most part.
On day 10 Lily was having a particularly bad day. She was incredibly uncomfortable, her heartbeat was dropping, she was struggling and “fighting a bit with the machines.” Joanne was encouraged to try ‘kangaroo care’ where the baby is placed on the mother’s heart for skin-on-skin contact, in the hope that it might help to calm and settle Lily. This would have been the first physical contact between them.
“it didn’t feel that I wanted to cuddle her. You know I never, like 10 days old ‘I just want to get her out and give her a cuddle’, I never felt that, you know, just wasn’t there.”
The process is very clinical. It takes about 4 nurses to get the baby out of the incubator, transfer various tubes and equipment, and make sure that no wires have come out or are in the wrong place. Initially Joanne felt very uncomfortable and strange, and felt like she just had an object on her with wires between them. “I remember just sitting there really, she was just there, and Paul was there, and there was nothing”
For the first few minutes Joanne experienced Lily as a thing, an object, a weight upon her chest. Eventually Joanne began to relax into and accept this new bizarre situation, and felt a determination to get through it, “let’s do this”, although she really wasn’t enjoying it at all. “I must have said ‘first time I’m holding my baby, you know, this is lovely’ and everything, but inside I wasn’t.” At this point Paul and Joanne’s focus turned to the machines, and they were stunned to realise that Lily’s heartbeat and in fact all of her stats that the machines were measuring were exactly where they should be, they were “perfect”, which had never happened before in her 10 days of life. The impact that this had on Joanne was life-changing. She described this moment as “like a switch”, it seemed as if a light had been turned on which drove the darkness out of her world. The realisation that Joanne herself had instigated such a huge impact on Lily, changed everything for her, and the sense of connection was almost instantaneous. Physically she experienced Lily as ‘sunken into her’, as if they were joined, connected, part of each other. The feelings of wrongness disappeared and were replaced with a sense of rightness. She immediately saw Lily as a baby, and more than that her baby, a part of her.
Lily’s amazing response to the physical connection with Joanne, allowed Joanne to connect with her role of being Lily’s mother.
“it was like she knew that I was her mum, whereas I’d never even thought of being her mum before that, you know I was just there, and it was that ‘she knows me, she knows it’s me’ and we’d never, ever seen her heart rate just the way it should’ve been, and I think that was the moment that I just thought ‘this is, you know, this is how I should feel, and she is alive and aware of me and she knows I’m her mum really’…and then I just didn’t ever want to put her back”
From this moment Joanne was able to connect to the world around her and to the present moment, rather than immersing herself in her longed for past or anticipating a fearful future. She believed “I can do this now”, and developed a steely determination to face whatever came from moment to moment, rather than attempting to escape into a bubble and yearning for home.
Me: At this point did they know if there was going to be any disabilities?
Joanne: No it was – they didn’t know, I didn’t care, it was just like getting her through this and what will be will be, but she’s my baby… I just remember saying to Paul ‘we’ll just cope with whatever but we’ll get through this’
Rather than leaving everything to the nurses Joanne grasped the responsibility of being a mum. She began to do all the cares, paid fervent attention to the machines, began to read Lily and understand when she was feeling uncomfortable or unsettled. She had taken ownership, accepted responsibility, connected to her new world, “she’s mine, she’s my baby and I can do this”.
That initial connection, that switch being turned on, allowed Joanne to begin to form a meaningful relationship with Lily. She no longer felt repelled from her, and instead held her hands, wanted to get her out and hold her at every opportunity. She started to talk to her for the first time, soothe her, play her music, interact with her, truly connect with her.
This mental connection triggered her body’s physical connection and she experienced the let-down feeling, which caused her milk to flow. Expressing became easy, and after some time she began to breastfeed, which happened smoothly and naturally. It was as if everything had slipped into place.
Ironically, on day 10, at the moment of connection, Joanne had to give up her room at the hospital and start to go home at night. Whereas before she had desperately wanted to go home, now she couldn’t bear to leave Lily. Her daily life became like a job, a routine of getting up at 6.30am, having breakfast with Holly and taking her to nursery, then driving an hour to the hospital where she would spend all day being with, and caring for Lily, then leaving the hospital at 11.30pm to get home again at 12.30am.
“I wanted to be there, I couldn’t get there quick enough because I knew that she needed me and I knew that she knew if I was there, and the not being there, that leaving, was really difficult.”
Lily made excellent progress and at about 6 weeks old was transferred to the local hospital, making daily life much easier. However, Joanne found the level of nursing to be completely different at the local hospital, and often arrived to find that Lily’s nappy hadn’t been changed. One day she arrived to find that a tube had come out and Lily was blue. In sharp contrast to life in the first few days with Lily, where Joanne had little awareness of the machines, and would simply watch as the nurses came and revived Lily, by this time Joanne knew as much as the nurses and screamed at them for allowing this to happen. It highlighted her distress at having to leave her, and she felt more needed than ever.
Aside from this stress, when Joanne was at the hospital, life became much more comfortable – Lily was in a lovely room, with comfy chairs, Joanne could take her lunch in, get Lily out on her own, close the door and be in their shared space together. There is a sense of peacefulness about the situation, and their connection and relationship deepened.
Eventually, at 3 months old, Lily was able to come home. Initially this significant moment was filled with joy and hope. A sense of relief that the worst was over, a sense that the family could come together again and be reconnected. However, Lily was very unsettled and had experienced such a tough start in the world that she cried constantly. This inevitably affected the feeling of connection between them.
“it turned out that because of the tubes down her throat she was in a lot of discomfort, but at the time, you can’t really think about, you just think ‘stop’, and even though I had that connection, when Holly was a baby I’d quite happily pick her up and just sit with her, sit there all day, whereas I didn’t quite have that with Lily.”
After a few days of being at home Lily had a relapse and had to be readmitted to hospital, “we were losing her, her heart beat had gone right down and she was just going again”. Unfortunately the local hospital made another mistake and tried to ventilate with a tube which was too big for her. This caused further trauma to her throat. The negativity and darkness that pervaded Joanne’s world during pregnancy and before the ‘switch’ moment, began to seep back in. She again felt that “this wasn’t meant to be”, that Lily wasn’t going to make it after all, and everything they had been through had simply delayed the inevitable. Her focus again was on an unwanted, negative future. She longed to be at home again and for this nightmare to be over.
Lily did come through it and was home again after about a month. Life was still very hard for Joanne,
“she was difficult, sort of like not enjoying any day of it, my breastfeeding went wrong, that had all gone. I think it was just the stress of just leaving the hospital, being here by myself, erm… I loved her, and glad she was home, but not that… you know…that feeling that you have.”
The initial connection, the switch, happened almost instantaneously. Joanne felt a sense of possession, that Lily was her baby and needed her, and Joanne was her mum. However, the trauma that they had both been through continued after Lily came home, and there still remained a sense of separateness between them. Lily was still very fragile and tiny. The way she looked was a constant reminder of all they had been through, “she didn’t look like a cute baby”. Bringing a baby home is difficult for the vast majority of parents – the crying, lack of sleep and constant demands that a baby brings with them is always a challenge. However for Joanne, who was mentally and physically exhausted, it was almost unbearable. Although she was connected on one level, she was also disconnected, separated on another.
I think from Day 1 I’d be like singing to Holly and talking to her and everything, and I just… not that I’d admit it to Paul, but she’d just be like there, you know in her moses basket, and I’d just be here and not really enjoying it.”
As time went on and Lily grew and flourished, life became much easier. She began to smile and become like any other baby, who didn’t require special treatment. The trauma started to become the past, and the present was filled with the normal, everyday business of being a mother. The connection grew gradually and naturally, and Lily transformed from being ‘the premature baby’, connected with pain and worry and anxiety and traumatic images and memories, to become a ‘normal child’, part of the family, with the focus on her blossoming personality.
“But then as she got bigger and you know, started to smile, I think all that came with it… the connection, and eventually, you know, I got that back and you know, it came in time…just time went on and she just turned into Lily (laughs).”
Guilt and Regret
“what’ve I done?”
Of the myriad thoughts and emotions which Joanne experienced throughout this journey, guilt and regret are revisited time and time again.
Joanne always knew that the pregnancy would be difficult. Her first daughter, Holly, was born after a traumatic pregnancy and she had endured several miscarriages too. She was so happy that Holly was born and felt so lucky and privileged to get what she had always wanted. She was certain that she would “never again” put herself through that. However, as is often the case with parents, as time went on and the pain and trauma became a distant memory, Joanne began to look at what she believed Holly was missing out on, “we’re not enough for her, she needs somebody else, she needs a little brother or sister.” The guilt she experienced at not meeting all of Holly’s needs, became her motivation for trying to have another baby. She was determined and fixated on achieving her goal, despite another miscarriage “there was no way I was not going to try again”.
From 13 weeks into Lily’s pregnancy Joanne was in incredible pain, confined to bed rest, unable to work or drive, and struggling to cope as a mother to Holly. Her first thoughts of regret began to surface “what am I doing? why am I doing this?” She forgot her initial motivation for trying to have another baby was an attempt to fulfil Holly’s needs, and instead her thoughts focussed on how she was failing as a successful mother to Holly. Joanne had always been a very attentive mother, getting involved in Holly’s games, playing, reading, singing. She increasingly had to rely on family and friends to look after Holly, to take her and pick her up from nursery, and reports feeling “selfish” and “guilt-ridden”. She desperately wanted to keep things ‘normal’ for Holly, and was angry with herself that much of their time was spent sitting in bed and watching telly together. She began to put Holly in nursery more and more, both due to her increasing pain, and to her sense of uselessness as a mother.
At 25 weeks the contractions started, and Joanne and Paul drove into the hospital. She remembers feeling that she was about to miscarry, and there is a sense of relief that she can get back to her old life and become the mother that she wanted to be again.
“I remember saying to Paul in the car ‘this is over, this is…’ you know, and probably deep down wanted it to be because I was like guilt-ridden about Holly”
Lily was born alive, and Joanne’s world was thrown further into turmoil. She was surrounded by people who barraged her with hopeful comments and reassurances, when internally Joanne was submerged in a sea of regret. She felt trapped and helpless as the doctors took over, “It’s sort of being told, yeah, you just leave them to it and they will keep her going, and inside I was… in the early days I just wanted it over”.
For several days Joanne barely kept herself afloat as negative images of the future washed over her, and problem after problem surfaced in her mind, “oh the house, my house can’t cope with…”, “it wasn’t the having a child with a disability, it was me coping with a child with a disability, because of the type of person I am I just wouldn’t be able to cope with that”, “what’ve I done to Holly?”.
She held herself personally accountable for this new, unwanted world that she found herself in. Her thoughts never once turned to God or fate, but turned inward as she tormented herself with the decision she had made, with the world she had created.
“what’ve I done to my life? I just remember thinking a lot about the words I said to Paul ‘never again’, and here I was in this whole new world of… and I just was so angry with myself, and worried about Holly and thinking, you know, ‘should’ve been grateful for what I had.”
Despite Lily making amazing progress and moving onto the CPAP machine by day 5, Joanne continued to drown in regret and guilt and focussed on her longed-for past, and her unwanted future.
“I was just thinking – ‘in the future, and family life, and what have I done?’… I felt like I’ve changed my life forever… and that’s all I could think about… I probably should’ve been overjoyed but at the time…”
There appears to be some relief from these feelings as Joanne experiences the “switch” and her focus is on being a mum to Lily. However, this relief is only temporary. When Lily comes home and Joanne is faced with the reality of life with a premature baby, and the possible difficulties that come with that, the guilt and regret resurface. She is struck by how much their life revolves around Lily, and how Holly, being the easier child to deal with, misses out. The days and nights are filled with Lily’s crying, and often Lily is attended to purely so that Holly is not disturbed.
When Lily has her setback and returns to hospital for about a month, Joanne craves the freedom to be at home spending Christmas Eve with Holly. These feelings linger and resurface at various points over the next few years. She frequently regrets the decision that she made, and dwells on the life they could have had if she hadn’t made that decision. Significant events intensify the guilt and regret. When Holly started school Joanne reports feeling incredibly stressed because she felt Holly’s life was being unfairly impacted by the way Lily was,
“so you’d put her in the car seat and from here to school she’d be screaming, all the way home she’d be screaming, and I just felt so sorry for Holly. I was just thinking ‘no other child…’ you know, they’re going to school… inside I was just so stressed, and I’m trying to be happy for Holly… starting school, such a big part of her life, and there’s just this baby screaming in the car, so even though I loved her and I wanted her I’m thinking I could’ve just been with Holly now, taking her to school, picking her up, doing stuff, I couldn’t do anything with her, to leave the house, to put her in her pram…she’d just scream”
It has taken several years for the feelings of regret, the ‘what’ve I done?’ feelings to gradually fade. Now Lily is 5 years old, has started school herself, and has become an amazing child with no disabilities at all, in fact is mentally and physically exceeding many of her peers. I asked Joanne if she would change her decision,
“I would’ve for a few years, I would’ve changed it… yeah, I still would’ve turned back the clock for the first few years… but now I wouldn’t.
Shame – The Private Self and The Public Self
During the dark days of disconnection Joanne’s internal world was a maelstrom of guilt, regret, fear, anger and shame. She compared herself to the other mums around her who appeared to feel all the ‘right’ things, and considered herself to be abnormal for feeling the way she did. She felt such a huge sense of shame and anger at herself for feeling the way she did, and in attempt to keep these shameful feelings hidden she created an alternate self, a public self with which she interacted with the medical staff and other mums around her. She wanted to be seen as “doing the right thing”, and so followed instructions and suggestions and said “the right things that people want to hear”. This appeared to start during the pregnancy when the doctors were encouraging her,
“’just get yourself to 24 weeks and then we’ll take each day, at the minute we’re taking weeks’ and I’m like saying ‘oh yeah’ but inside I was ‘I just want this over’ you know ‘this isn’t right, there’s not going to be a good outcome’.
After Lily’s birth it became more pronounced as she was surrounded by medical staff, and had little space to just be herself. Her words and actions were driven by this public self,
“So eventually then said ‘oh I’ll go back down’, because it was the thing to do because why would I not be sat there in the room?”
Her public self said and did all the right things as Lily began to make progress, but her private self was filled with fear for the future, guilt and regret. She remembers her shame when struggling to express milk,
“There was a kitchen with a big massive fridge in it and each person had their own shelf, so my name was on this shelf and when they were showing me where to put it (sigh) the little like sample bottles really, there was just like hundreds in there, all named with who they belonged to, and I couldn’t get a drop, and I was just like ‘what is wrong with me, why can’t I do this?’ but I was determined to carry on, I wouldn’t give in because I don’t and it’s not the thing to do.”
Joanne’s public self, driven by shame and a sense of duty of what she should be doing, at first glance appears to be detrimental – it covered her authentic feelings, and shamed her into acting a certain way. However, it ultimately provided her with a way through the darkness, a structure without which she would have collapsed. It led her to the point where she was able to make an authentic connection with her baby,
“But the nurse’s sat down and going through this kangaroo care, and I would say ‘oh yeah, you know, definitely’ and inside I’m thinking ‘uh (sigh) just I’ll do it cause it’s like a formality’ but I didn’t feel like I wanted to do it.”
Once the connection was made with Lily, the ‘public self’ seemed to disappear. She began to feel the way she ‘should’ feel, and there was no longer a need to hide her internal private self from the outside world.
It only reappeared briefly after Lily returned home and Joanne struggled to cope, and felt ashamed of not enjoying her time with Lily.
Although Joanne’s experience is unique to her, it seems clear from the literature review that many mothers in a similar situation also experience these ‘negative’ thoughts and feelings. I wonder how many of them also create a ‘public self’ like Joanne, and so further the illusion that everyone else seems to be feeling and doing the ‘right’ thing.
The purpose of the interview was to get an understanding of Joanne’s lifeworld and her lived experience of making a connection with a premature baby. It was important that we stayed away from ‘doing therapy’, however as a trainee of transactional analysis I am drawn to provide some hypotheses about what may have been going on for Joanne from a transactional analysis perspective. These are merely hypotheses and would have to be checked out with Joanne before they were proven or disproven.
The first thing that struck me was that Joanne’s internal dialogue often seemed to be between a Parent ego-state and a Child ego-state. There were many beliefs about how she should be feeling, thinking and acting and she often chastised herself for not adhering to these beliefs. These appear to be from a Critical Parent part of herself. Her description of how she was actually thinking and feeling appear to be from a Child part. She was scared, felt alone, unable to cope, and wanted to run away. Although the Critical Parent was harsh, it also provided some structure, some norms and guidelines for her to follow, in counter to the Child which felt chaotic, lost and which desperately wanted to run away. At the moment that she experienced ‘the switch’ she seems to move into her Adult ego-state, living in the here and now, accessing the reality that she can cope and taking each moment as it came.
I get a sense that she has a ‘Be Perfect’ driver, a desire to get everything absolutely right, which in her mind she falls short of and the Critical Parent is quick to judge. I wonder if the enormous guilt that she felt about not meeting her own high expectations of being a good mother to Holly is related to this ‘Be Perfect’ driver. It would also be interesting to explore whether the feeling that the pregnancy and ultimately the baby “didn’t feel right” is connected to Joanne’s expectation of how a ‘perfect’ pregnancy should be.
There seems to be evidence of a ‘Please Others’ driver as Joanne frequently adapts her behaviour to fit in with how she perceives others want her to act. This over-adaptation could be a passive behaviour which indicates some level of discounting. Coming from a Child position she discounts her own feelings and needs, in order to meet the imagined needs of others. An example of this is when Joanne decided to go down to the NICU to see Lily soon after she was born. She doesn’t consider other options that are open to her, such as taking more time to adjust to the idea, or talking with the medical staff about how she is really feeling. Whether she is unaware of these options, doesn’t regard them as viable options, or doesn’t feel that she is able to ask for these options is unclear.
Another area that stood out for me is life positions. When Joanne was feeling disconnected, she appeared to come from an ‘I’m Not OK – You’re OK’ position. She compared herself to other mums around her who she perceived as doing and feeling all the right things, and judged herself as not OK for feeling otherwise. This position also seems to fit with her opinion of the medical staff in the early days after birth, as she “left them to it, they knew”. However as the connection with Lily grew this position changed, sometimes she seemed to feel ‘I’m OK – You’re OK’ and sometimes ‘I’m OK – You’re not OK’. She began to consider herself to be the expert on Lily’s needs and was critical of how the nurses were caring for Lily.
Critical and Reflexive Evaluation
Although familiar with quantitative research, qualitative research and specifically phenomenological research is new to me. However, after a training weekend with Linda Finlay where the world of phenomenological research was brought to life, I was excited, enthused and totally convinced of the relevance and importance of this type of research.
I chose my close friend Joanne to be my co-researcher on this project, mainly due to my interest in her story but also (naively) because I thought this would make it easier for me.
During the interview I think that I was largely able to bracket off most of what I already knew about Joanne and her experience, however found myself drawn to rescue her when she began to describe how Holly had been missed in the process. I see Joanne on an almost daily basis and am aware how much time and energy she puts into parenting. She is a great mother and I found it hard to hear her giving herself such a hard time. In particular on page 19 of the transcript I say,
“But I know you, and I know that even though so much of your time would’ve been taken up by Lily, Holly wouldn’t have been forgotten.”
This takes Joanne away from her own experience and feelings, and leads her to consider retrospectively if this true. It takes her out of the description of her lifeworld. However, I was immediately aware of what I had done, and brought her back to the focus.
I was also aware that Joanne had never had the opportunity to tell her story in its entirety before, and so allowed her to talk about experiences which may not have been relevant to the focus of the research. Being my first project, it’s difficult to know whether I allowed this because Joanne is a friend, or if this is part of the process which involves respect for the co-researcher and giving them some power in the direction of the interview.
I believed that our close relationship would allow Joanne to reveal deeper aspects of her experience that would possibly have been uncomfortable to share with a stranger. On reflection it’s difficult to know how much she may have withheld due to our close relationship and her own issues around shame. Clearly in this type of research the information that is discovered and the way the interview develops is always dependent on the relationship between researcher and co-researcher, and the dynamics that are created between them. It would be fascinating, although impossible, to know how the interview and the consequent findings, would have differed with another researcher focussing on the same question.
The process of analysis has been both challenging and rewarding. I immersed myself into Joanne’s lifeworld which enabled me to get a clear picture of what she was going through. However, at times it was as if Joanne and I became one – I felt the pain, fear, disconnection, shame and also the joy, relief, and sense of connection. Obviously much of this was my unique interpretation of the information that Joanne had shared, and my own history and sense of self was thrown into the mix. I became aware that I knew a lot more about Joanne than she knew of me. I felt some guilt and a sense of intrusion that I had had a glimpse of her inner world and turmoil, which is rarely shared with another. I also felt immensely honoured that I had been given that privilege. This had a huge impact on me, and inevitably impacted my analysis and writing.
I found that I was driven to tell Joanne’s story in its entirety, and was loathed to miss out any information pertinent to that story. The main theme that I chose to concentrate on, ‘From Disconnection to Connection’ is an attempt to illustrate her lifeworld and to tell her story, and hence is possibly too broad. At the back of my mind I had the picture of Joanne reading this research, and an urge to please her and meet her needs. I also felt very protective of Joanne and believe I may have unconsciously minimised ideas that I thought she would be uncomfortable with and feel shamed by, possibly paralleling her over-adaptation. I could have explored in more depth the sense of revulsion and repulsion that she touched on when describing what Lily looked like, and how she “couldn’t bring herself to touch her”.
I’m aware that my inexperience also affected how I presented the themes. I was hesitant of being too ‘flowery’ in my language, although understood that this could add to the resonance of the piece. Essays that I have done prior to this work have concentrated on theoretical ideas, and the language used is quite different. I believe I have taken a step towards the language required for resonance, though feel I am not quite there as yet.
I carried out the literature review after I had completed the analysis and written up the findings, in order not to influence the path of my own research. I was heartened to see that many of the concepts I touched upon had also been highlighted in other research in the area. Although this project focusses on Joanne’s unique experience, it is clear that similar themes are emerging in comparable research. There is much in Joanne’s experience that will resonate with other mothers of premature babies. I think of particular interest is the emergence of a ‘public self’ – an attempt to hide the thoughts and feelings perceived as undesirable or ‘wrong’ to others. It would be extremely useful and relevant for medical staff involved in the NICU to have an understanding of this. If they are able to talk to the mothers about it and provide a sense of normality and support for these feelings, the process could be quite different.
Over 50,000 babies are born prematurely in the UK every year. I believe it is important to develop an understanding of the impact that this has on the mothers of these babies. This project attempts to bring to life one mother’s experience of having a premature baby, and sheds some light on the internal processes, thoughts and feelings that emerge in the process of making a connection with their baby.
Joanne’s journey was a transformational experience. Her lifeworld before the connection is almost unrecognisable from her lifeworld after the connection. She moved from passive observer to active mother. Her view of Lily changed from object to baby; not mine to mine; wrong to right. Her sense of self moved from self-doubt to self-confidence; self-critical to self-belief. Her focus shifted from the past and the future to the present. Throughout all of this she experienced feelings of guilt, regret and shame, which led to the emergence of a public self in order to hide these painful feelings.
Although there was a dramatic moment of connection for Joanne, ‘the switch’, it is clear that this connection was definitely impacted by the traumatic process they had been through. The trauma lingered for a few years, and never completely went away. However, the further Lily moved from being ‘the premature baby’ towards becoming ‘a normal child’, the sense of connection and attachment grew with her.
An understanding of this experience would be useful to all medical professionals involved in the NICU, and to other therapists like myself who may come into contact with mothers like Joanne. An awareness that these emotions are normal and natural, would provide enormous reassurance and support through this intensely difficult time.
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