Having a Premature Baby By Rhina

I’ve often seen it written in books and articles about birth and breastfeeding that it is very important for mothers and babies to be together ‘early and often’ in the early days and weeks, to enhance bonding and breastfeeding.

Yet, the experience of a mother and her premature baby is often vastly different from this and many face initial separation from each other at birth, and then several weeks of further separation. These mothers may only be able to visit their babies once or twice a day, because the mothers are sent home from hospital and their babies are left in the care of staff.       These mothers have no choice in the matter.

I have three beautiful children, James, Jessica and Sarah.   Sarah was born seven weeks premature, in what I can only describe as a traumatic event.      I had planned to birth at home.     I’d had James by caesarean.       I had a normal birth experience with Jessica, in hospital, and even though I had some unpleasant intervention, it ended up being a mostly positive experience.   However, I did not want to have another baby in hospital.  Unfortunately, I had placenta praevia, and I haemorrhaged at 33 weeks. I had an emergency caesarean under a general anaesthetic, and my daughter Sarah was born at 6.05am, and admitted to the NICU (Newborn Intensive Care Unit).

It was nearly eleven hours after her birth before I saw my baby for the first time.   I asked the midwives looking after me many times to let me see her. They kept saying ‘soon’. I was given a photo, but it made no sense to me.   I recognised the baby because she looked like one of my babies (only in miniature), except that because of the morphine I couldn’t get my eyes to focus properly on the photo. I just couldn’t believe that staff were making no effort to reunite me with my child, and that they thought a photo would be good enough!

I was distraught, in pain, and unable to get out of bed without help. At around four o’clock two of my friends and my midwife arrived. They were astonished that I had still not seen my baby, so they helped me into a wheelchair and took me to see her. I was wheeled into the newborn intensive care unit. I had no idea which incubator held my baby. I was instructed to wash my hands.   My baby was then introduced to me by a nurse who seemed very kind.

It wasn’t until later that I realised what an impact this ‘introduction’ was to have on me.  I could see that this beautiful, tiny baby was mine, but I did not know her. This wasn’t the ‘gentle unfolding’ of our relationship in a warm supportive environment that I had anticipated.       Where we would gaze into each others eyes (as I had done with her sister), and I would carefully commit to my heart every minute detail of her tiny perfect fingers and toes. Then when we were both ready I would gently offer her my breast.   No one would hurry us. Her father would be there too, and her brother and sister.   We would be ‘family’. No one would even think of removing her from our arms.

Instead, there I was sitting below the incubator in a wheelchair, feeling nauseous, with pain and drugs, having to reach my arm up and into the incubator to touch my baby, as a nurse took my baby’s hat off to show me her hair and tell me it was blonde.     She said I could touch and stroke her arm, but when I asked to hold her I was told no, that she’d had ‘a big day’ and ‘needed to stabilise’.   I had no idea how to respond to this.   It intensified my feelings of shock. The whole day was surreal in the way only the worst type of nightmare can feel.   I didn’t stay for long.  I was completely overwhelmed, physically and emotionally.       The grief and trauma I experienced at that first meeting with my baby still brings tears to my eyes.  However, I knew very strongly in my heart that in order to facilitate bonding and initiate breastfeeding, I needed to be with this child, and I needed to ‘get it together’ fast.  Sarah had premature lung disease and was on CPAP (Continuous Positive Airways Pressure) for 4 days.     She spent a further 3 weeks in the newborn unit.

Unfortunately, mothers are expected to go home 4 days after a caesarean delivery.       This prospect terrified me.       I just couldn’t bear the thought of leaving my baby.   I wondered ‘what kind of madness was this?’     Surely if I just asked nicely, and convinced the staff of my sincere need to be with my baby they’d let me stay.       After all there was BFHI to back me up, and I was still unwell and exhausted.  The manager of the ward supported me as best she could and allowed me to stay for a further 4 nights.       There were many obstacles in the way of Sarah and I being together in those early days.     I believe that many of them were unnecessary, and some of them simply inhumane. The nurses in the NICU would often tell me to go away and sleep. They could look after Sarah, I needed the rest, and they didn’t want mothers there during the night. As if I could rest two floors away from my baby?!   All I knew was that I needed to be with Sarah. There was a lack of appropriate seating for mothers in the NICU, which is particularly important for mothers recovering from a caesarean. I spent a lot of time in that first week standing next to my baby’s incubator, or trying to perch on a high stool.

Pumping my milk was a new experience for me. This started out reasonably positively.  My midwife managed to express a syringe full of colostrom before Sarah was born and another syringe full whilst I was still only barely conscious, in the recovery room.     Sarah benefited from receiving my colostrom, even though it was via a tube and not my breast.  I was grateful that staff in the high dependency unit and later on the staff on the ward were willing to hand express my colostrom for me while I couldn’t bend my arms, as I had lines in both arms.   After the lines were removed I had the mobile pump brought to me. My milk came in less than 48 hours after Sarah was born, and I attest this to the dedication of my support people hand expressing my milk for me every two to three hours around the clock.  Unfortunately, around 48 hours after Sarah’s birth the staff would no longer bring the pump to me so I had to walk the full length of the ward, and back again at least 8 times a day to the ‘pump room’ in order to pump. This was in addition to the time it took to walk to and from the lift and down to the newborn unit to see Sarah.   I relied heavily on the pain relief! My milk supply was abundant and I quickly built up a stockpile in the freezer.       Later on it would get more difficult to pump, but I believe that part of the reason that I was able to continue to breastfeed Sarah exclusively and later on to build up a supply to meet her growing needs was because of that early frequent hand expressing, and later on the frequent pumping.

On the eighth day I was discharged officially from the hospital and expected to go home and visit my baby in the hospital each day, bringing expressed breast milk with me.      BFHI didn’t seem to apply in my situation.   I was distraught, but determined not to leave Sarah alone in that building without her mother close by!  I slept on a couch in my clothes for two nights, in the lounge alongside the nursery in the newborn unit, where Sarah slept.   She had by this time graduated to a cot, and to the lowest level of intensive care in the newborn unit.   Two of my friends sat with me for several hours on the first night and kept watch, while Sarah and I had a nap snuggled up together on the couch. Bliss!

A sympathetic paediatrician then gave me a bed for 4 nights over Easter.   I had mixed feelings about this at the time.     On the one hand I desperately needed the privacy and some sleep, yet on the other hand, the room I was given was down the hall from Sarah and I couldn’t hear her if she cried.    After those four nights I returned to sleeping on the couch. This was met with strong resistance from staff and the hospital hierarchy.       I pleaded my case, and cried many tears.     Eventually at the end of a long day of distress and negotiation, I was told that my continued use of the couch would be quietly tolerated as long as I did it secretly. This meant waiting until the last mother left the unit for the night, often around 11pm or later, before lying down, only to get up twice in the night to breastfeed or pump my milk.  And sitting up with the blanket hidden before the first mother arrived at about 6am.   Needless to say I did not get much sleep!  There were so many times that I despaired, but I was determined not to leave my baby.      It was so hard at times, making decisions that I didn’t want to have to make, that I resented having to make.  I travelled half way across the hospital campus and up a flight of stairs to the cafeteria three times a day to buy food for myself, which meant leaving Sarah alone.

I needed to express my breast milk, which took at least 40 minutes each time, in order to get a decent amount, and to prepare and then clean my equipment.        My husband would come and sit with Sarah once a day while I drove home (uninsured, because I’d had a caesarean) to shower and change.   I was not allowed to shower at the hospital.     If I had been roomed in with my baby these things would have been unnecessary, or significantly easier to achieve.     For example I could have expressed milk while sitting next to my baby.

However despite the challenges we faced, there were many benefits for Sarah of my presence.   Sarah latched on and breastfed for a short time at 33 ½ weeks, at a time when I was told by staff that she wouldn’t be able to breastfeed for at least a week or even two, and that she wouldn’t be able to co-ordinate sucking, swallowing and breathing for quite a while. I’ll never forget that first breastfeed.     I was holding Sarah skin to skin next to her incubator.     I had taken my bra off (under my pyjama top) and I was just holding her in the cradle hold, against my breast.       As I was watching her it seemed to me that she’d made a rooting movement with her head and mouth. Without thinking about it I simply offered her my breast, as naturally as I had offered it to her brother and sister before her. She latched on!   I was astounded, and supremely thrilled. I also felt that Sarah had showed them! Ha!       She only sucked maybe 4 or 5 times actively, and then nodded off.     But I was triumphant.

I naively thought that this meant we would be roomed in together as she was able to go to the breast, and that we would be home soon, maybe even in a few days.  How wrong I was, and it seemed to me in my dismay that the nurses were somehow enjoying telling me that Sarah would be in the hospital until at least 38 weeks gestation.       I was determined that I would get her out of there faster than that.  By 34 ½ weeks Sarah was exclusively breastfed 4 times a day, including at night, and tube fed the other 4 times.     The nurses wanted Sarah to go onto a 4 hourly routine while we were there, but she stayed 3 hourly with my goal to breastfeed her ‘on demand’.   The 4 hourly practice made no sense to me then, and it still doesn’t now.

Sarah gained weight well and breastfed well, despite being sleepy from jaundice. (She needed to be woken for feeds until she was about 39 week’s gestation, nearly 7 weeks old).   I did all her ‘cares’ including the preparation of her tube feeds. Unfortunately I was not allowed to cup feed her, or use a Lactaid (nursing supplementer), and I had to ‘test-weigh’ Sarah before and after every breastfeed, something I instinctively wanted to refuse to do, but I couldn’t as it was hospital protocol.  It’s unbelievable how a few grams or the lack of them could come to mean so much anxiety, and how reliant     I found myself becoming on the hideous ‘test-weighs’!       Getting Sarah to take a full feed at a breastfeed so we could avoid the dreaded ‘top up’ via a tube, became so important to me.       I began to become obsessed about the numbers on the scale, and it was really hard later on after we got home to completely trust in my body and my baby, without knowing exactly how much she had taken at a feed. This was something that took a while to overcome.   Interestingly Sarah gained 250 grams in her first week home, and 750 grams in her second week home.       I started to trust myself again after that!

Sarah loved kangaroo care, and I did this as often as I could in the newborn unit, or was permitted to.     I noticed with interest that while Sarah was still attached to monitors that showed her heart rate and respiration, she would communicate her contentment of our skin-to-skin contact by having beautifully even respiration’s and her heartbeat was steady.     As soon as she was put back in the incubator the monitors would beep often and she wouldn’t be so settled.       I interpreted this to mean that Sarah felt better when she was in contact with me, her mother. In fact I have since read research that backs this up.  Nurses would often say that Sarah was being over stimulated and that she needed to be back in bed.  Sarah would often at these times be asleep on me.     But according to many of the nurses she wasn’t sleeping as well as she would do in a bed! It seemed that if my friends were with me, I would get to hold my baby for longer.     The nurses would leave me alone, but as soon as my friends left they would come over and persuade me to put her in bed.   Sometimes I resisted, but other times I would do as they suggested. It was important to me not to upset any staff as I relied heavily on them continuing to tolerate me sleeping on the couch.   Towards the end of our stay I left Sarah more and more in bed sleeping, in-between breast feeds.  I had learned to ‘play the game’.

Some of the nurses were supportive of me and tried their best to help, by bringing me food and allowing me to hold my baby for longer than other nurses would allow.       This was great and I appreciated their support.     But it was also hard at times dealing with the changes in staff due to shift changes and never knowing for sure who was going to be on, and trying to remember what the rules were for each nurse.  There were times when I just couldn’t bear another moment of the place, and I would leave and go for a walk or to the cafeteria, or just sit and try and tune the place out.     I needed to protect myself emotionally.     I think also the impact of having to express my milk or breastfeed and mother my baby in such a public arena, with other mothers doing the same thing, and feeling that the nurses were scrutinising us all just added to my need to sometimes escape for a while.

We finally left the hospital when Sarah was 36 weeks old, and she was exclusively breastfed.    My initial surge of triumphant joy and sense of relief at coming home with Sarah very quickly gave way to exhaustion and despair as I had time to realise the enormity of the journey that we had taken.  Even before I had Sarah, my friends and I discussed this issue, and planned what we would do if it ever happened to one of us; however the reality of fighting the system was more difficult than we could ever have imagined.  I am fortunate and forever thankful to have such wonderful friends who actively supported me during my struggle to be with Sarah. Without their support and care I don’t know if I would have had the strength to fight to the small extent that I did.

In New Zealand it seems that the focus is more on clinical outcomes for premature babies, rather than on the needs and rights of the mother-baby dyad. I often wonder what it is about the reality of an incubator and nursing care that means a mother cannot choose to be with her baby constantly, and it surprises me that BFHI does not seem to apply to premature babies and their mothers.  Advocates have worked (and are working) hard in New Zealand to ensure that not just our choices in childbirth and the breastfeeding relationship are protected and supported, but that a parent’s right to be with their sick child is also upheld.     It seems to me that premature babies have yet to be included in this.

You would hardly know that Sarah was a premature baby now. She is a thriving 2 ½ year old, who loves to hang out with her older siblings James and Jessica.    It has been a long journey for me in the last 2 ½ years. I can now accept the reality of Sarah’s birth, and celebrate the fact that we both survived.  But I cannot accept the separation that we endured, simply because the health system does not recognise that mothers and babies need to be together.  My hope for the future is that none of my three wonderful children or in fact any parents in the future have to endure being separated from their infants at a time when they so desperately need to be together.

Neonatal Unity for Mothers and Babies