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, Matthew,
Rebecca 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 Matthew by caesarean.
I had a normal birth experience with Rebecca, 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 Matthew
and Rebecca.
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.
A Midwife's
Story
As
a midwife I often get to see first hand the enormous stress that having a
premature or sick baby places on mothers, especially when they are denied the
right to spend as much time with their babies as they would wish.
I would like to share an example with you.
Jane's
(name
changed to protect identity)
labour with her second child started well but when her baby began to show signs
of distress and the previously clear amniotic fluid began to reveal meconium the
decision was made to transfer from the local rural birthing unit to a base
hospital.
Shortly after arrival her baby was born but due to his poor condition he
was whisked away by to the Neonatal Intensive Care Unit (NICU) before Jane saw
little more than a glimpse.
By the time Jane had birthed her placenta and taken a shower (this took
a while as the hospital was busy that night and all the showers were occupied)
it was nearly two hours since her son had been born and she was anxious to see
him.
Luckily her husband had accompanied the baby initially and had reported
that he was stable but of course Jane wanted to see him for herself!
On
arrival in NICU we were about to enter the nursery when we were hustled out and
told it was ‘staff handover’ so we would have to wait.
Not wanting (or able) to go far Jane sat down in the narrow hallway and
waited for about 15 minutes.
This might not sound long but I can assure you this was no mean feat for
a woman who had waited 41 weeks to meet her son and had just experienced a
tiring and difficult labour (not to mention the swollen haemorrhoids!)
Finally another mother leaving the nursery saw her sitting in the hallway
and told her that handover had finished 10 minutes earlier so we could come in!
So Jane finally got her first real look at her son, what a magic moment,
until five minutes later we were again asked to leave, as it was now time for
the Doctors rounds!
In the end on that first evening Jane only got to spend about ½ an hour
with her son before she had to head to the wards above to get some rest.
Of course sleep is hard to manage when you are concerned about the
well-being of your child and is even harder to achieve when you must share a
4-bed post natal room and spend the night listening to the other Mums in the
room tend to their babies.
Over
the next 2 days Jane spent as much time as possible with her son however the
pattern established above continued with Jane having to leave her seriously
unwell son whenever the staff required this.
She also had to return to the wards for her meals and to express her
breast milk for her baby, not to mention waiting for the Obstetric doctors to
make their rounds so she could request a prescription.
However this inconvenience was nothing compared to the discovery that on
day three she was to be discharged without her baby.
As she lived well over an hours drive away the option proposed was that
she stay in the nearby hospital hostel (about a 5 minute walk from the NICU)
however this involved an accommodation charge plus the cost of purchasing meals
at the hospital cafe, so Sarah made the decision to commute, getting up each
morning at 7am and returning in the late afternoon.
Jane told me that leaving each day without her baby is one of the
hardest things she has ever had to do.
Finally
a week after his birth Jane was able to take her son home.
He is now healthy and happy and no one is exactly sure why he was born so
unwell but one thing is for sure, Jane will never get another chance to
experience much of that precious first week with her son which was denied to
her.
Emma's Story
|
I was induced early with baby
number 4 at 34 weeks, my waters had started leaking. It was a huge
shock after 3 “ normal “ births. Luckily I asked to see the SCBU
before the induction because it was a real eye opener. Nobody had
told me what was going to happen. If I hadn’t have asked I would
have been in for one heck of a shock. The nurse looking after me had
told me “baby will probably be fine at 34 weeks and be able to be in
your room with you”. How wrong she was. He was born a healthy size
of 6lb 10oz! Unfortunately he had a lung infection and couldn’t
breath unaided. He was whisked away immediately and put in SCBU. I
wasn’t to touch him again for 4 days. Looking back I was very ill
informed about what would happen and what I could and couldn’t do
i.e. stroke him, change nappy etc. I was too scared to even touch
him with all the tubes etc. I found the SCBU a very scary place,
other mothers didn’t seem to talk to you or share their experiences.
I had 3 other children at home and lived an hour away from the
hospital. I was absolutely shocked when they tried to kick me out
after 4 nights. They told me I could have an extra night because
baby was in SCBU. The nurses on the ward didn’t seem to know that
because I was always being asked where my baby was. I tried hard to
stay and even made a bed up in the storage closet! I slept in the
expressing room one night. Once breastfeeding started I wanted to be
with my son 24/7. I wanted to get up in the night and feed him
myself, even thought the nurses would happily tube feed him. In my
experience you had to ask, ask, ask because the nurses weren’t too
up-front about information, they were just busy going about their
job. I often felt like an intruder in the unit. My son is home now
and is bigger than my other children were at his age! You would
never know he was premature at all. I feel for any families going
through this and wish them all the best. The injustice of not being
able to stay with my son has stayed with me and there needs to be a
change. |
|
 |
Wendy's Story: My Experience
with SCBU
I think you call it something different but I know it as SCBU
or the special care baby unit.
My story starts on Auckland anniversary weekend at my nieces birthday, I
started to get a bloody discharge so of course I rushed to the hospital
delivery suite and the midwives just sat me down on the bed, looked at the
discharge on the pad, and then sent me home, not telling me what this
discharge was. They just said that it’s all fine and to relax and go home
that they will see me at my next antenatal visit. I was only 34 wks and 3
days pregnant.
At 3am the next morning (Monday, January 28th) I was hit with the
contractions. I waited till I was sure that that is what it was and then
went to the hospital. The midwife thought it was just an upset uterus but
the doctor on call had a look and yes I was in labour, 3cm dilated at only
34wks 4 days. After an 11 hour labour and a very difficult delivery will
little to no pain killers (midwife didn’t want to give too much as it might
affect the baby) my little boy was born and whisked from me to the heat
table. I got a 2 second peek and then he was off to SCBU. This was so very
hard for me and my husband because this was our second little miracle and we
didn’t really know what was going on. We also had hoped for a quick cuddle
before he went.
After having a shower and getting rid of the shakes I was wheeled to the
SCBU for a quick 2 minute hello and then off to the ward. This is where my
heart broke. Our maternity ward was virtually empty and had three 4 bed
rooms close to the SCBU....I thought that I would be in one of these rooms
to be close to my little boy...... but no I was wheeled right down to the
end of the maternity ward and housed with three other mothers. I took
this in my stride and was determined to get back to my boy. My husband
convinced me to have a sleep while they got him sorted out and he was going
to see if I was able to get a room closer...only to be told no that this was
the room for SCBU mums .
We gave up trying to get a closer room not just for me but the other mums in
our room. So we waited 2 hours... the longest in my life. Then the nurse
came down with a bottle and a leaflet stating that they wanted me to hand
express so that they could feed our son. I was shocked I thought that I
would be allowed to breast feed. I was informed that this wasn’t the case as
our son wasn’t strong enough. That nearly killed me honestly, as here I was
in the ward; I hadn’t seen him much yet and hadn’t even been able to get a
hold, and now to be told that I wouldn’t be able to feed for a few days.
I did as they asked until the lactation nurse came and I asked her if I
could try and feed my boy, she said that she would see what she can do. It
took 4 days till I was allowed to feed him and finally get my first cuddle,
which was when they moved him from the heat table to the incubator. It was
these first four days that I found very hard. I wasn’t able to spend much
time with my son at a time because there are thieves in our hospital that
target mums with babies in SCBU and the hospital have nowhere to lock your
valuables away. Also, you’re not allowed a cell phone in the SCBU unit;
you’re allowed it on the ward but not in SCBU. I was doing the whole
expressing off and watching all these other mums with their little ones in
SCBU breastfeeding right in front of me. That was so hard and I got to a
stage that I timed my visits for when no one was breastfeeding which was
about 10 minutes every 3 hours, or else I was getting too depressed and I
would go back to my room, pull the curtain and cry my heart out. I couldn’t
understand why they were allowed to do it and I wasn’t.
Then finally came my turn. I thought I would be allowed to do every feed but
I was informed by the nurse that it would be only every third feed. Having
told them that I wasn’t happy with this and that they were not allowed to
give him formula, I was made to express off every two hours; very tiring, I
tell you this. I put up with that for 1 day and then a lovely nurse came on
and I said to her that I wanted to do every feed and to demand feed, and she
let me. She was great and I finally started to feel like a real mum at last.
That feeling is magical I tell you.
However seeing this, the nurses then demanded that I stop expressing, and as
this was my first premature baby I didn’t know better. I slowed it down and
in the end I stopped expressing. I wish now that I hadn’t. Having got
him to feed exclusively by the breast, when he was off most of the machines
my husband and I started to ask the big question when can we take him home,
because we knew that our time for staying in the hospital was nearly up (10
days only) and we didn’t qualify for rooms near the hospital. My husband
knew that I didn’t want to leave without our son...my heart was broken again
when I was told that we had to wait till he went back to his birth weight...
you see it took his sister nearly two months to achieve this, and she was a
full term baby. Determined to get him home I pushed myself to demand feed
whenever he wanted it and I convinced his doctor that he would be fine to
come home before the birth weight goal. On day 10 after him gaining weight 2
days in a row he was allowed to leave with me. I am glad I pushed for this
as I knew that with a toddler at home and me not driving that I wouldn’t be
able to get to the hospital as much as I wanted or I felt I needed. It took
him till he was classed as full term ( 5 .5 weeks) for him to get back to
his birth weight so that would have meant myself and my family would have
missed that whole month of bonding at home if I had let the doctors have
their way.
Our son is now 12 weeks old and I am still fighting to get my milk back to
expressing off 100 mls at a time (this is what it was when I stopped
expressing). I know that he is only drinking 60 mls at a time
currently but it was so hard to keep up with the changes in his feeding
without expressing off as his feed amount would change per feed. It was the
lactation nurse that told me to go back to expressing off when I told her
that I had nearly dried up. So now it has taken me 9 weeks and I am slowly
getting there.
My advice for anyone that is looking at having to have a prem baby or that
has a prem baby is to fight for what you feel is right. If you want to
breastfeed, fight for it; If you don’t want them to give your child formula,
fight for it. Don’t back down. This is your child not theirs.
Don’t give up expressing, even if they tell you too. You can always freeze
it and use it when baby goes to the grandparents or if you end up having to
leave baby with dad. It’s hard to try and get that flow back up once it has
dropped back down to what baby is taking. Get used to this baby being
different from your others and not sticking to a routine. We had our
daughter on a routine straight away and she only had two wakes during a
night. Our son can feed anywhere from every two hours to every 5 hours at
night. It was explained to me that this is because even though he is 12
weeks old he isn’t at a size (he is only 6lb 13 oz / 3.08 kg) that most
newborns are so his stomach is tiny. That is why they feed the way they do.
I hope my story helps some other first time prem mum.
Thanks,
Wendy
