In the Neonatal Intensive Care Unit (NICU), infants are physically separated from their parents and this often has an impact on the physical, psychological, emotional health of both the parents and the infants. Family Centred Care is an approach to planning and delivery of health care that encourages greater parent involvement in their infants’ care. However, parents generally remain relegated to a supportive role in the NICU, and the majority of care for the infant is provided by NICU professionals.
The Family Integrated Care (FICare) model is an extension of the principles of Family Centered Care. It is an actionable model by which parents are true partners in their infant’s care, even when in the NICU. This model was developed by a healthcare team that included parents who had previously been in the NICU (veteran parents). Integrating parents into the care team in Family Integrated Care goes well beyond merely allowing parents to be present and observe their infant’s care.
In the Leeds General Infirmary, FICare wasn’t implemented, however it was at St.James’s. As of this year, I was delighted to hear that FICare is also at the LGI.
During our time in the LGI we couldn’t be more grateful for everything the staff did for us and for our daughters. They really were incredible. At the time I didn’t know any different, I didn’t know anything about FICare or its benefits. The most important thing was the care Charlotte and Esme received and anything that we got to do with them as parents felt like a bonus.
However, with hindsight and after experiencing FICare at St. James’s, I can’t help but think of all of the chances I missed out on to feel more like a parent at the LGI. At St. James’s I was integrated into all aspects of Charlotte’s cares, such as with her feeding, nappy changes, bathing, providing oral medications, decision-making, and taking part in ward rounds.
On Monday 25th September 2017 I was invited by Bliss premature babies charity to talk at their Family Integrated Care Study Day and then join a panel at the end of the day for a question and answer session. I felt very privileged to be asked. I practised many times; to Connor, to my neighbour, in front of Charlotte and her teddies, in front of my Mummy friends, down the phone to my sister and to my girlfriends. I frequently got choked up at different parts as I was reminded of the reality that was my life. Each time I practised I was unable to look up from the paper but my lovely, honest girlfriends reminded me that it was important to address the audience. When I arrived home after seeing them and got out of my car I noticed what a beautiful, starry night it was. I sat back in the driver’s seat, kept the door open and read to the stars, just me and my Esme. I did it, I knew my talk and hardly had to look at the paper at all. I could do this.
I was determined to do it. I wanted to do it for myself, for my girls and for all those parents who experience an unexpected start to their newborn baby’s life.
I believe that FICare is how a parent’s experience in the neonatal unit should be.
Below is my speech.
A chance to feel like a real Mummy
Hello, my name is Amy Campbell, I am wife to Connor and I have twin daughters Charlotte who is now one and Esme who sadly died at seven weeks old.
I am a co-founder of Campbellinas. Campbellinas was set up in memory of Esme to raise money for neonatal units.
Charlotte and Esme were born on the 10th July 2016 at 26+6 weeks gestation.
You can follow my story in depth at thisismybraveface.blog
Not feeling like a real Mummy
Nobody could have prepared me for my journey into motherhood.
There I was, a new mother, yet I was attached to breast pumps and spent my nights cuddling ‘fleece buddy blankets’ instead of my babies. I couldn’t protect, hold, hear, kiss, feed or even dress my babies. Was this how motherhood was supposed to be?
Above all, the feeling that upset me the most was I didn’t feel like a real Mummy. I didn’t feel like the Mum I so desperately wanted to be.
When the girls were a few weeks old and we were no longer living by the hour, I began to relax into my new role as a Mother. I had my little routine and found my ‘Mummy jobs’ to do.
I spent my days talking to the nurses, having skin to skin (if they were well enough), comfort holding, doing their cares and making several trips to the expressing room.
It makes me smile how I refer to it as ‘Mummy jobs’ because for many weeks there was a strange feeling of being a visitor.
It was only when I found my feet in St James’s, became involved in the Family Integrated Care, that I stopped asking for permission, built my confidence and began to feel like a real Mummy.
Mummy jobs: Skin to skin
My favourite ‘Mummy job’ was skin to skin time.
I held Esme when she was three days old and Charlotte when she was eight days old.
Unfortunately Charlotte and Esme were always too poorly for it to be possible to hold them both at the same time. I didn’t mind this too much as I imagined I would have plenty of time for this when I got them home.
I would sit in excited desperation to feel Charlotte or Esme against my skin and in my arms.
As soon as they were picked up by the nurses, they would look tinier and even more fragile. I would study how the nurses handled them and felt lucky that my babies were being looked after by such caring and attentive people.
During the hours I held them, I would forget how critically ill they were. I loved giving one a cuddle whilst keeping an eye on the other. The nurses made me feel at ease and I enjoyed reclining in the arm chair, putting my feet up and reading them a story. I enjoyed it when the staff would come and chat to me. Over the summer I felt I had made many new friends.
Despite having a numb bum and my arms aching, I never wanted the moment of holding them to end. It was difficult handing them back to the nurses.The cuddle gave me so much strength and the ability to believe that everything was going to be ok.
Sadly, I only got to hold Charlotte and Esme together when we found out Esme wasn’t going to make it.
Even though I knew we were saying goodbye to Esme very soon, my life finally felt complete, my heart felt whole and my arms felt full. Today I feel grateful for that opportunity.
On many days, Charlotte or Esme would be too poorly to hold so I happily settled with comfort holding. I would spend hours sitting awkwardly on a high stool or standing in a strange position with my hands through the incubator windows. I enjoyed being close to them.
After hearing about recent research that showed reading to premature babies can aid their progress I knew the importance of the girls hearing my voice. However I often found it difficult wondering what to say to them.
When I did get stuck for words I would look at my girls and be hit by a sudden realisation that I was looking at my very poorly, tiny babies. These moments hit me hard and I would just cry. I didn’t want this to happen every time I spoke to my girls so reading stories really helped me.
Reading stories was also something that my family really enjoyed doing when they visited.
Doing their cares
Whenever we got the opportunity Connor and I would do Charlotte’s and Esme’s cares. The nurses were brilliant and when I phoned in the morning they would ask what time I’d be coming in so they could save doing their cares for us.
I liked doing their cares and enjoyed getting everything ready and preparing it on the top of the trolley. This was something I had learnt from watching the nurses. I talked to Charlotte and Esme all the time and explained what I was doing. I became more and more confident at handling them, knowing what pressures to use and learnt to ignore the alarms and focus upon what the girls were doing. Connor described it as similar to the board game Operation.
I felt I was doing a good job as a Mummy and felt proud when I was finished, knowing they were all clean.
Expressing for half of Yorkshire
One of my main ‘jobs’ was to feed the girls.
I was lucky that I was able to express. It was the one thing that kept me going and was the one thing that only I could do to help Charlotte and Esme. Many of the hospital team congratulated me on keeping on going. The thought of stopping expressing, even through the hardest of times, never crossed my mind.
Over the summer my milk supply became bigger and bigger.
By six weeks, one of the ward sisters laughed and said I had expressed enough milk to feed half of Yorkshire.
After Esme died I no longer needed all my milk to feed two babies, I decided to donate all of my breast milk.
Other Mummy jobs
I found many of the ‘normal Mummy’ jobs I did during the day in the hospital helped me to feel more like a Mother.
I spent quite a lot of time rearranging and folding their clothes and muslin cloths in their trolleys. I imagined doing this if they were at home.
I would watch carefully and ask how the nurses made the nests and kept their incubators so tidy. They had a way of making the girls look so cosy and comfortable. At times I felt a little envious of their skill and also competitive to make my nest just as good as theirs. I think there was also a bit of in house competition between the nurses about who made the best nest.
I always asked if I could help the nurses change the sheets in the incubators. It felt such a privilege the first time a nurse asked if I wanted to lift Charlotte while she changed the sheet. On previous days the nurses had done the lifting. I was very grateful to be involved. The breathing tube and all the wires made it a bit tricky to get my hands smoothly under her head and bottom but with determination, I soon mastered the skill.
Feeling like a Mummy at home
One of the hardest parts of my day was leaving Charlotte and Esme and walking out of the intensive care door. Every time I left, I felt like my maternal instinct and mother nature would start screaming at me. When I was away from the neonatal ward, the fear intensified and panic often settled in.
At home, other than expressing, I was grateful to do other ’normal’ Mummy jobs, like washing all their muslin cloths and clothes.
Believe it or not, I loved it when I arrived at the hospital in the morning to see their pretty floral laundry bag bursting with cloths and clothes covered in blood and nappy leaks. I had a new found love for doing the washing. I loved being able to do something that a mummy would be doing if she brought her newborn baby home.
Arriving at St James’s
A week after Esme, died, Charlotte was transferred to high dependency at St James’s.
As we left intensive care, my legs felt wobbly and my heart was beating out of my chest. We had made it. I don’t think I have ever felt more proud than I did walking with Charlotte from the neonatal ward to the Embrace vehicle. We were on the road for home.
On first impressions the ward at St James‘s looked so different. It was certainly more homely, less institutionalised and there were pretty curtains over the windows. The rooms were much darker and quieter and things seemed at a much slower pace.
A chance to feel like a real Mummy
During our first day, the nurse explained to us about Family Integrated Care.
I had spent the best part of two months feeling like I needed to ask for permission before doing anything with Charlotte and Esme. I was scared of doing anything that could jeopardise their recovery or even, at times, their lives. I yearned to do all the things that were included in the Family Integrated Care. It felt like a different world. A world of motherhood.
FICare was about getting to know my baby. It was time to get used to the responsibility that I had to look after my child and not to rely on the machines or the nurses.
FICare gave me the opportunity to do all the things which I had craved to do as a mother. Things such as lifting Charlotte up, changing her nappy, getting her dressed, changing her incubator or cot sheets and feeding her.
It enabled me to embrace my maternal instinct and give me the opportunity to feel like a Mummy. It was an inkling of what my life might be like if I could take my baby home.
Life at St James‘s
At St James‘s I sensed that there were greater opportunities to meet other mums. I enjoyed our chats discussing our babies and the nature of the neonatal ward. It was comforting to know I wasn’t alone.
Compared to the LGI, the roles between the parents and the nurses had switched. Connor and I did everything with Charlotte when we were there. I loved it. It gave me ownership, responsibility and a taste of motherhood. It gave me my daughter back.
Whilst writing this speech, I asked my sister what she thought of St. James and she replied “It felt like you were doing all your Mummy jobs. It was nice to see you being able to do everything. You looked really happy and I enjoyed you showing me how to do everything. I loved watching you lift Charlotte out of her cot and it was good to see you positioning Charlotte correctly on me.”
This made me smile when I heard this.
On the 22nd September, we excitedly moved to special care. There were twins in every other room and I was very grateful to the neonatal staff for keeping us separate. It meant a lot to me when I found out they were researching pictures of butterflies to go above Charlotte’s cot. I asked if we could have a little cabbage white butterfly as one seemed to be following me everywhere I went. It was this high level of care that meant so much to me.
Connor and I continued to do Charlotte’s cares just like we did in the LGI except this time I could go and get everything I needed (nappies, cotton wool or sterilised water and bed sheets or towels to make their nest) from the cupboard myself. This simple thing of not relying on the nurses to do everything, made so much difference. It gave me a sense of freedom.
When the nurse suggested we could give Charlotte a bath, I couldn’t wait for Connor to arrive in the afternoon so we could do this together. I was happily surprised to see that she absolutely loved it and didn’t cry once. Looking back, I think I enjoyed giving Charlotte a bath more the second time around when I knew what to expect with regards to my emotions. The first time, as amazing as it was to see Charlotte enjoying the water it also made my heart ache that we weren’t in the privacy of our home and learning how to hold her and bath her ourselves.
With reference to the family integrated care documentation, such as the Observation Chart, I have to admit I found this difficult. As a special needs teacher I understand the importance and the legal requirement to documenting everything. But even in such a clinical setting, I wanted to behave and feel like a Mum, just as I would at home. I was more than happy to tell the nurses everything that needed to go on the sheet but for me, it was a flashback to work, documentation and overload.
Tube feeding and breastfeeding
I have never known an hour to go so quickly than when Charlotte needed tube feeding every hour. This was something Connor could be involved in. He enjoyed the feeling of achievement and receiving instruction in tube feeding and learning to know how to insert the nasogastric tube. As his time was limited because he was at work during the day and travelling every day from Wetherby to Newcastle to Leeds, he was more than happy to cuddle Charlotte while I did the tube feeding.
I enjoyed watching him hold Charlotte while I took time changing Charlotte’s sheets and carefully making her nest. It was time to feel like a family. The first time I picked Charlotte up and handed her to Connor, he panicked and said “Are you sure you know what you’re doing? I think we should get the nurses.” I told him to sit down and calm down. I think this was a big sign that my confidence had grown and I felt like I knew what I was doing with my daughter.
I was very proud of both myself and Charlotte, when together we managed to establish breastfeeding. As she was still so diddy and often tired, we combined breastfeeding with tube feeding. All my months of expressing all made sense. With the guidance of the nurses and the multi tasking of using nipple shields and juggling with wires, Charlotte and I learnt how to breastfeed.
It was quite scary at first as due to my heavy milk supply I kept almost drowning the poor girl, sending the alarms off and having many nurses run towards me as a matter of urgency. I remember beaming so widely when a nurse said “I think she’s going to be a proper little breast feeder.” and that she was.
When the girls were first born I enjoyed being there for ward rounds and felt quite important being present. I often appreciated Connor being there as I sometimes I didn’t understand all the medical terminology or the only thing I could focus on was staring at my tiny, critical ill babies. Connor enjoyed the medical side of it and had flashbacks to his a-level biology. When ward round was finished I always asked him what they had said and I was able to understand his interpretation. Anything we didn’t understand or needed clarification of, we were able to ask the nurses.
If we were unable to make ward round, we always made sure to ask the nurses what the consultants had said and if there were any changes to the girl’s progress.
After five weeks in the LGI and after both girls recovering from being seriously ill, I couldn’t be in the same room or listen to the ward rounds for fear of hearing anymore bad news. I used to see the consultants arrive and make an excuse that it was time to go and express. When I returned I nervously asked the nurses to let me know what was said.
At St. James’s it was a different story. I felt able to be present and in a short time contributed to the ward rounds.I felt very proud and quite clever, maybe a flashback to my school days, when I knew the answers to the questions the consultants were asking. I always made sure I was there for the ward rounds and immediately phoned Connor after. He would wait anxiously for my phone call to hear what they said. From the ward rounds, I knew exactly where Charlotte was at in her development, her medical care she was receiving and what her next steps were. This was invaluable to me.
It also provided a benchmark to get me through that day and I looked forward to hearing what they had to say the following morning.
The first time I administered Charlotte’s medication, I found it quite daunting but also felt quite important. It was nice to feel trusted to be able to do this but I was worried about getting it wrong. The nurses got the medication ready for me and then showed me exactly what to do. It soon become second nature. I gave Charlotte her medication whilst tube feeding but was also shown how to give it her into the side of her mouth or with a little bit of milk in a bottle. It was invaluable practise for when we went home, especially with the amount of medication Charlotte required throughout the day.
When I arrived at St. James’s I initially looked forward to all the teaching sessions that the physiotherapists, occupational therapists and speech and language therapists did throughout the week. As I arrived one morning, I caught the tail end of one of them. I found it interesting and something that I really should be aware of so asked the physio if she wouldn’t mind repeating the parts that I had missed. It was great to be able to talk to the therapists face to face and I felt they gave me the time to listen and respond to any questions I had, specific to Charlotte’s needs. I found it very helpful. It was good to be involved in all the aspects of Charlotte’s development and understand where she was currently at, how we could support her and what her next steps might be.
I went to another talk but as it was held in different ward room I felt quite uncomfortable being surrounded by other mums and their babies and afterwards was quite upset about how they looked a lot better and bigger than Charlotte. As the weeks went by, there were twins in every room apart from mine and I felt very anxious and upset seeing them from the ward door let alone being at a talk in a room with them.
So, unfortunately, despite my interest in attending these talks, I became more reluctant to. I would have found reading notes about the sessions really useful.
It was good to be aware that Charlotte was being looked after by a multidisciplinary team.
Throughout the summer Connor and I received weekly support from the clinical psychologist. That support was so beneficial to us, and her amazing ability to make me rethink the situation from a different point of view and to give me comfort was second to none. I was shocked and saddened to hear that she no longer came round the Neonatal Ward. Her support was integral to my mental well-being and my ability to keep going and stay strong for my girls.In my own personal experience, I believe this service should be readily available in that environment. Even my husband, Connor who doesn’t generally like to talk or open up about these kind of things, also found her invaluable.
At the beginning of October the outreach nurse came to see me and said that we would now be looking at the next stages of preparing Charlotte to go home. I never thought I would ever hear anyone say that. It was a distant dream. The neonatal ward had become my life. I burst into tears.
The week before going home, I stayed in the neonatal ward, determined to get Charlotte fully established with her breastfeeding and secretly hoping to get rid of the nasogastric tube, to be free of one wire, although deep down I knew this wouldn’t happen.
I don’t think I’ve ever been more scared than I was the first night Charlotte stayed with me in my room. I was petrified of her apnea alarm sounding and having to scream for help.
Connor stayed a few nights and we enjoyed wheeling Charlotte around on her portable oxygen to the Family Room in the Maternity suite to watch X Factor and The Great British Bake Off. I’m not sure many parents had done this as the staff found it quite amusing. Watching the TV, drinking cups of tea, eating biscuits, breastfeeding and watching Charlotte asleep in her cot are some of my favourite memories of the neonatal ward. I felt like a real family.
On the 10th October, on Charlotte’s due date, we went home.
For me, FICare played a huge part during my time at St. James’s. It helped underpin the understanding and belief that I was a Mum.
Thank you very much for listening and if anyone has any questions I’m more than happy to answer them.
When I entered the conference centre at the start of the day and saw the other neonatal hospital teams setting up their stands with pictures of premature babies, I began to feel really emotional. I had flashbacks of being in the neonatal ward. Flashbacks of both Esme and Charlotte and reminders that those pictures were my life and I had once had my two babies with me. I was with a team of professionals I knew from my time in the Leeds General Infirmary and they were incredible, gave me a big hug and made me a cup of tea. It was just what I needed.
My talk was at 11:30am. That gave me long enough to turn into an anxious, sweaty, heart racing mess. As I listened to the talks by the professionals before me, I experienced several anxiety attacks and heart palpitations. I still wanted to do it but the waiting was driving me crazy.
I was finally called up. As I began reading my speech to the room of 120 health professionals I could barely concentrate on speaking because of the ridiculous way that everything from my hips downwards had started to shake. I have never experienced my bum cheeks shake but there I was reading my speech and feeling like I was shaking for England. I had to stop after a couple of paragraphs and explain, “I’m really sorry, I’m just struggling to concentrate as I am having trouble controlling my whole bottom half from shaking.” The audience laughed with me. That felt better.
There were parts in the speech about Esme, about losing a baby and then the excitement and joy of bringing Charlotte home, where I was unable to hold my tears back and stop my voice from shaking. I got through it though, took sips of water and continued. I found my certain points around the room to focus on and with courage keeping me on my feet, I continued reading my speech to the end.
When I was finished, I received a huge round of applause. I felt very proud of myself and very proud for my girls. That afternoon I received many heartwarming comments, congratulating me on my very moving talk, my bravery and what a fantastic job I did. Apparently there wasn’t a dry eye in the house. I had done it. By sharing my experience of neonatal life with and without FICare I had helped share the importance of incorporating it into practice.
Throughout the day, I found it very interesting listening to the health professional’s talks about FICare and hearing it from the medical side.
After listening to all the success stories and how FICare is implemented in other countries, I can’t but think the upsetting, regretful thought that, maybe, just maybe, I might have got the chance to hold both my babies for longer. I know I can’t think like that but after listening to several studies it has played on my mind. With education, my anxiety might have been reduced and from the outset, I might have felt more like a Mum and less like a visitor to my girls. I also wouldn’t have experienced such a sudden change in practice from one hospital to another and had the gut wrenching feeling of starting all over again.
After learning more about FICare, my passion for premature babies and to support families in the NICU grew. I believe that FICare is fundamental to supporting the welfare of parents and their babies. I am now looking forward to becoming a veteran parent at Leeds and becoming involved in FICare.