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Incubators out - how many babies have died unnecessarily?

So I blogged back in July about Kangaroo Mother Care, and it seems on this front things are really hotting up!  A story hit the media last week that finally got the world's attention; a baby born at 27 weeks, was declared dead after doctors spent 20 minutes unsuccessfully battling to get him to breathe.   with no vital signs, they broke the news and mum asked to say goodbye to her baby.  Two hours of kangaroo mother care (KMC)  later, he began to breathe.  His mother (luckily) followed her instincts and gave him some colostrum on her finger - he took it and his breathing became regular...


Whilst this is a lovely heart warming story, it inevitably makes you wonder - how many prematures pronounced as stillborn, got two hours of skin to skin?  how many prematures are rushed away from their mothers under the false belief artificial high powered technology can do a better job?  Even when Jamie began to breathe, doctors dismissed this as a reflex action - how many other infants have done this and it's been dismissed as a reflex?  As someone on an internet list pointed out, perhaps its fortunate for this baby that those early signs were dismissed as a reflex, as he may not have survived further resus.  I for one find this terrifying!

My own son was only 6 weeks early, had agpars of 9/10 and yet was rushed with urgency to the SCBU where they immediately wanted to supplement with artificial breastmilk substitute and put him under a heated cot.  When I declined the panic was tangible, but this is what we do?!?  ok well on your head be it! I endured 13 days of sheer hell for daring to defy, question, seek alternative advice (for which I still owe Annalisa and Nils so much!) and decision make myself.  Change from this norm will NOT come easily.

Whilst some are stunned by this story, Nils Bergman has hardly batted an eye:
This is an emotive story, but hardly original!
Unusual, but occurs ... actually right here in Cape Town just two weeks ago !
Susan Ludington-Hoe opens one of her books on Kangaroo Care with a similar anecdote.
Nils Bergman

Nils believes it is all down to the protest despair response I discussed in my first blog post:

To almost all newborn mammals, separation from mother is life-threatening. This activates a very powerful defence response, which is to shut down and immobilise
He hypothesises that because the nervous system of prematures is so immature, if there is stress during delivery the only way their body can cope is to "shut down" to survive. 

It is "skin-to-skin contact" which is the key, because the deep sensory fibres from the skin go to the "emotional processing unit" of the brain (amygdala), and tells the brain "you are safe". This de-activates the dissociation (un-safe mode), and restores the regulation (safe mode) - which is the real function of the vagal nerve.
Nils Bergman

So why then are we still taking babies away from their mothers and putting them in an artificial womb like environment?  As I mentioned before, not a single study has shown adverse outcome with KMC - yet women still have to endure being separated from their babies, why?  I wonder if the decision makers have ever taken a call from the mum of a premature infant, desperately trying to produce enough breastmilk in an environment so removed from normal, she may struggle even to express enough for a small feed.  To hear her sob she has never even held her baby, she's only allowed to stroke a finger through a hole in the side of his incubator.  We sometimes forget that incubators are as artificial to a mother as they are to baby; she may be in shock her baby has come early, may feel grief for the end of her pregnancy and then has her baby taken from her.

These mothers are extremely vulnerable during what can be a traumatic experience, and as it stands women cannot even sleep on the same ward as their baby!  In our SCBU & NICU unit (which were together) there was around 26 cots and 6 mother's rooms.  Many are discharged home without their infant (yes really whilst supposedly trying to establish breastfeeding!) and end up in a frantic pattern of trying to express enough, get milk to the ward in time, sterilise everything required and then visit their baby - which of course is made a whole lot more interesting if you already have another child or few at home! 

So  many people fund raise for SCBU, yet I only ever hear about the next 15k required for a snazzy incubator.  I know if people feel that saved their baby, they feel they are doing the right thing in helping others to also have access to technology; but just think what a profound difference this money could make if it was spent keeping babies and mothers together - not only in terms of health outcome in the short term, but breastfeeding rates would soar!  there would be a real longterm gain.

Perhaps we need a campaign to provoke change?  Anyone feel strongly enough to hop on board and help organise something?  If so email me!

20 comments:

  1. I feel like crying reading this. how many babies were not dead when the doctors said they were?? Everything these days is so clinical, even your supermarket!

    My 1st baby was born 10wks early and i didnt even see her at all for about 5hours was brought a polaroid photo almost straight away. But that was it, everything else felt traumatic!

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  2. I cried when i originally saw that news story, wondering exactly the same, "How many babies have died because they werent given the opportunity for skin to skin?"

    My best friend's baby was 6 weeks premature. She was breathing unaided right away, but was still whisked off to an incubator. My friend struggled to establish breastfeeding, her already-high blood pressure shot through the roof with the stress of trying to recover from a c/s, get breastfeeding started, express the feeds she couldnt give in person and cope with being seperated from her baby, her firstborn. She was discharged after a week, and had to rely on lifts from family and friends in order to make the 10 mile trip to the hospital to tend to her baby, due to the section. It is no wonder that, at 3 weeks, as her little girl was discharged from the SCBU, she gave in and switched her to formula. KMC would have saved them both all this heartache, as i am sure the temperature problem that kept the baby in SCBU would have been sorted alot quicker had skin to skin been encouraged. Indeed, when my (full term) baby had trouble maintaining her temperature after out wonderful hb, i refused hospital care and spent two days cuddled up with her skin to skin, and her temp regulated itself.

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  3. When my youngest was in the NICU for treatment of persistance of fetal circulation, I was one of the only mothers who was there day-in-day-out. One doctor even told me they usually tell first time moms to just enjoy their last baby-free days/weeks and wait for the hospital to give them their healthy baby. Thank goodness for the wiser doc who told me early on that my being present for my baby "was the best thing I could do for him." And due to the use of a HFOV, I could not hold him for several days, but I spent many hours stroking his head and letting him hold my finger, singing to him. We *both* needed it.

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  4. Hi Donna - yes I think it's MASSIVELY traumatic to be separated from a newborn, and not something many staff understand. I can remember being desperate to go round to see mine and staff saying oooh go for a shower, have some tea and toast - I remember thinking how surreal it all seemed when my baby was 6 wards away!

    keljbj it's no shock at all about your friend - it's an impossible situation to establish breastfeeding in, I've spoken to the mums trying to deal with it and it's terrible. I'm a bit stubborn and although I was discharged after 24 hours, point blank refused to leave (bearing in mind it was my second and I was SSOOOOO much more informed than the first time around!) meaning they suddenly found me a room (and no doubt added to my popularity as the mad mum who had dared to argue with a registrar!)

    Temperature is one of the BIG SCBU daily battles - when I asked to do KMC to regulate, I was told what's the point of getting it regulated on you? we need it done in the cot! that's the level of understanding we are currently dealing with.

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  5. Penny this also echoes my own experience totally - I was frequently told to "go home and relax" despite the fact I was feeding every couple of hours (making shooting home anything but relaxing and I did it twice per day anyway to sort my other child out!) get off the unit as it's not healthy to be here all the time etc.

    One SCBU nurse did come at the end to apologise for the way her colleagues had been - she said they are SO used to getting mothers who do as instructed, never question or offer a different opinion, they sometimes forget who the baby belongs to...I think there's a lot of truth in this...

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  6. My daughter (now 6 years old) was born 4 weeks early. She was tiny but healthy except for low blood sugar, requiring a relatively brief 5-day stay in the Level II nursery (babies needing more attention than "normal," but too few problems to require a stay in the NICU). I was encouraged to sit with her in the nursery as often as possible, to feed her, to hold her, to change her diapers. But she had to stay there because they were monitoring blood sugar, oxygen sat levels, etc. I wonder now if I could have shortened that stay by a couple of days if I'd been allowed to detach her from all the monitors and just spend some time skin-to-skin with her.

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  7. Hi Bethany
    Or perhaps not even have had her stay there at all - as KMC is shown to regulate blood glucose levels.
    The language you use is typical, and highlights exactly what I mean by some of my comments:
    ""if I'd been allowed to""
    I'm sure you meant if they had encouraged me to, because of course you are "allowed" - it's YOUR baby.
    I'm really not having a go at you as it's the mindset of neonatal care Nationwide - including that of some HP's...

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  8. Actually, the staff who hear Mothers express sadness at separation pick you up as a possible Child Protection issue and at higher risk of PND.

    ***ROLL EYES***

    It is perverse.

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  9. I don't understand the above statement about sadness and Child Protection....can you explain this link for me? Ta

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  10. Count me in. My son went to the SCBU when he was born, it was a home birth but he didn't breathe properly (nothing to do with home births!) We went to hospital where they shone a bright light on him etc. and he ended up in an incubator on a glucose drip. All ended well luckily but it was a very cold and clinical start with no breastfeeding help at the very start - someone just suggested I tried - it was only the second time I had held him in 10 hours!

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  11. Hi Lisa
    PM me best email addy to invite to a yahoo group :)

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  12. I had my son at 33 weeks. After seeing him for maybe 2 minutes after delivery, they took him to the NICU. I didn't get to hold him again for almost 24 hours. When I asked about kangaroo care the nurses said absolutely not. And, I didn't get to breastfeed for 11 days it was the last night my baby was in the NICU that my husband and I roomed in. I had got all kinds of books on preemies and breastfeeding preemies. Everything I read was agreeing with my instict......and that was to hold him and let him nurse. I just don't understand why we as mothers are told to go against our motherly instict and listen to the doctor who, most of the time is a man and has NO idea what a mother's instict is all about. They were telling me to pump and then they would feed him through a bottle. He eventually became apnic while eating and a doctor suggested I try breastfeeding and guess what.........It worked! He took very well to breastfeeding and I am happy to say he still is at 10 months.

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  13. Ive applied for Uni starting sept 2011 as a childrens nurse and i hope from my experiences with my own children, a prem baby, and a cardiac baby. I can help and support new mums, and their babies.

    Isnt it the the survival and death rates in neonatal care have not changed in the 25yrs the unit have operated?> If this is the case I think this is terrible and that this is probably why they have not tried anything "new" maybe its about time more research was spent in this area.

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  14. I am swedish but have lived in the UK for 13 years. My stepsister is a midwife in sweden and when I fell pregnant with my son (born 3/3/10) she sent over a lot of info about breastfeeding and amongst other things the breastfeeding guide for HCPs, last edited in 2008. In that book there is a chapter about kangaroo care and I am pretty chocked that it isn't implemented at all in this country. It also says that the WHO recommends kangaroo care for all prem babies born before week 28 and sick full term babies (that's where theres access to good medical care, ie developed countries). I am VERY confused how there can be such a difference between two european countries?
    I want to thank you for a fantastic blog by the way! (I left the link on the bounty forum about the foremilk/hindmilk confusion)
    I think my partner is getting a bit fed up though :-) as he always gets an earful when I've checked out the latest :-)

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  15. Sorry, should have said all prem babies born week 28 and later......

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  16. oOoOoOo I would love to see the book - but am guessing it's all in Sweedish? lol
    I know what you mean about the difference in countries - I think culture plays a massive part too. Sweden had amazing bfing rates which means it's likely culturally they were at a very different place.

    I've received some really emotive emails on this subject - for as many that embrace new evidence based information (particularly if it means not separating mother and baby) others have a hostile knee jerk reaction - particularly from the parents of preemies who have used incubators.

    I was accused on one forum (in an extremely aggressive and rude fashion) of posting irresponsible information and how utterly ridiculous I was to suggest "a cuddle" could replace an incubator, and would I be happy if someone took their baby from an incubator and they died (as though I had devised the theory of KMC myself!!)

    What is it they say? First they ignore you, then they laugh at you? lol

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  17. Hi, Thanks for raising this issue! My 3rd child was born at 33weeks and I had a similar story of being hassled because I refused to leave my child. I did not know about KMC then, but I knew that if my daughter could have spoken she would have said "mummy please don't leave me" and so I didn't (aside from to get food or take a shower). I slept on a couch in the NICU for over 2 weeks, secretly. The staff threatened me with the psych team (other mothers don't cry) and thought my behaviour was unusual. I was traumatized by the separation from her in her first few days of life. I was unconscious when she was born and didn't get to see her for over 11 hours. I begged and begged the staff; and finally my friends came and bundled me into a wheelchair and took me to her. I was not allowed to hold her for 3 days, and finally a nurse said "have you had a cuddle?" and when I said no, she said "why not?" . I just looked at her with disbelief "because your colleagues wouldn't let me" I said. After my experience my friends and I formed a group in NZ called NUMB (Neonatal Unity for Mothers and Babies) and we have been trying to campaign to bring mothers and babies together. Parents of children in a paediatric ward would not be expected to leave their children and go home. We are still trying but attitudes are very hard to change and the incubator is seen as the basis for care. I love the work of Nils Bergman and Dr Adik levin.

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  18. Hi Donna
    So sorry it's taken me so long to answer! Gosh your story sounds very traumatic, it's terrible isn't it! I will reply to your email now :)

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  19. Hi Armadillo! I'm an NICU nurse in a level III (smallest and sickest). We believe in skin to skin contact as much as possible, unfortunately our barriers seem to actually be the parents themselves! We have strict handling times with the micro-prems (due to feeds, over handling, potential for skin breakdown, etc), and I often find that when I tell parents that baby's handles are at X, Y and Z, and that KMC needs to happen for a MINIMUM of one hour, they are either so late that I've had to do my handle (I wait up to 30 minutes, meaning baby's feed is delayed close to an hour, which is a lot when we're feeding small volumes every 2 hours), or they can't stay for much longer than an hour.

    Relentless teaching, providing all the research studies, etc, seems to improve this only marginally. We've worked to provide a more family friendly space with the very cramped, bright and loud nursery we do have (provided space and really nice equipment to do KMC, pump kits, a pump room or the ability to pump at the bedside, screens, etc). I've had countless parents end KMC early because they have to "go move the car" or whatever (makes me absolutely nuts)


    Has anyone ever pumped while doing KMC? I've tried it out with moms a couple of times, but it's always been very anxiety provoking because mom is usually nervous about the baby falling over (most of our little little ones have a breathing tube), or she can't see properly. I've tried with baby tied to mom, but then the breasts are covered... any suggestions?

    And I'm so glad I found your blog, so many fantastic resources!! Have you had much experience in helping prems learn to breastfeed?

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  20. Hiya Allison
    Are parents discharged home without baby? ie are they travelling in for cares/handles?
    I really wouldn't have expected parents to be the big barrier, when I was in parents followed instructions from nurses to the letter (to the degree I used to say if the nurses told them to do a headstand for an hour in the corner as it would help their baby get better - they would do it!)
    I think pumping with KMC might only be easily doable with older prems? For the reasons you mention.
    My DS was 34 weeks and 4lb odd, so huge compared to those you care for - but KMC wasn't (and still isn't 6 yrs later) supported in our SCBU at all. Have supported prem mums inc triplets, but not in a KMC setting as there isn't one! x

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