Expressing Breastmilk for a Baby in NICU


This is the first moment Natty tasted breastmilk.


This is not a photo I thought I would ever share with anyone. I have stumbled across it, yet filed it away several times. Intensely private, it was almost too painful to look at, yet now I see it anew, with pride in my heart. This is the first moment Natty tasted breastmilk.

Natty's first taste of my breastmilk and 'Kangaroo Care' at 4 days old






I see every detail within it now; the hospital gown, the engorged milk-ready breasts, the birthing necklace, tubes taped to my skin, jaundice, fragility, fear.  A faceless, nameless angel helping our baby learn to feed.  Our baby's first taste of my milk, taken from a hard plastic syringe. Gowns, monitors, beeps, disinfectant.  Blankets and toys  donated by unknown wellwishers.  

Lost time.

I have recalled very little of that detail until now, blocked by the healing of time.

But the time has come to share this image.  Spurred on in part by the arrival and feeding journey of my first baby niece.
I know it conveys a powerful message and if it helps one Mum continue to feed her vulnerable tube-fed baby with her own milk, even partially, even for one extra day, if she wants to, then it is worth broadcasting.  For only now, with hindsight, do I see that it is a beautiful, positive image and one that shows that babies in special care can be fed their mother's milk.

I don't want to suggest that all mothers and babies who find themselves in a similar position should or could achieve the same. For some the stress and worry of the arrival of a poorly baby is more than enough to contend with.  But for me, feeding my daughter gave me a purpose, a focus, a tangible act I could carry out for her, while she still wasn't quite 'our' baby. I know that many women are told that babies with Down's Syndrome are unable to feed, often by midwives. This is to dispel that myth too.

So here is our story, of the first 3 weeks of expressing for our baby

Fortunately I had experience of breastfeeding before Natty arrived. I had fed her elder sister Mia successfully for around 20 months. We'd overcome a shaky start, with blistered raw nipples, and some stress-related milk flow reduction, and gone on to enjoy the close bond and easy convenience that breastfeeding offers. I too was breastfed, and that is all I had ever really considered for my children.


When Natty entered our world I was left shaking, shocked, blankly staring ahead, while she lay several wards away in SCBU fighting for her life.  

Our birth companion asked a midwife what we were to do about the breast milk.  
The reply cut through my numbness; 


'Don't worry, it'll soon dry up after the shock she's had today.'


The assumption flicked a switch in my brain. Despite not being sure if I even wanted to see or touch this baby with the scary Syndrome called Down's, my instinct to feed her myself was switched on at that moment.


Several hours later, we returned home our community midwives joined us there. Supportive, positive, offering firm words of wisdom, and bringing with them a breast pump
They advised me on how to hand express the precious colostrum and collect it in a syringe.  The plan was to refridgerate it and take it to our baby in the morning, when we had tried to get some rest. Suudenly I had a role, something useful to contribute in a situation in which we were otherwise useless.

The morning came and I prepared myself to collect the life-giving colostrum.  This was not how it should have been, alone in a bathroom at home, our baby lying unloved 30 miles away. She should have been latching on, cuddled in my arms, feeding as and when she wanted. By rights, we would have been snuggled up in our bed watching her latch on minutes after she was born.  


I collected the liquid gold in a teacup, poured it into the syringe, put the plunger into the syringe, and, stupidly, squirted the lot over the bathroom floor.  My exhausted brain couldn't have foreseen this epic failure. I sat, broken. 

To this day I feel guilty that Natty didn't get this vital shot she so deperately needed.

Next step; using the pump. I was lucky to have been lent a pump, but in fairness it was a very basic one. Electric at least, but not powerful and it only catered for one boob at a time.  It was the kind of pump you might buy to express a little bit to leave with a babysitter whilst you pop to the shops. It was not the kind of pump you need to express every last drop your growing baby needs to sustain it.  It sufficed however, for at least a week, but it was a slow process, so I would spend literally hours every day plugged into the thing. I would have to wake myself twice in the night to express as milk flow was better at that time. Visitors would come to the house, and Bob would talk to them while I sat in a corner with my back turned, hooked up to the milking machine. I had become a glorified dairy cow.


Somehow, the knowledge that the milk might give her strength, might heal her, protect her from the illnesses to which she was vulnerable, might give her one or two additional IQ points made me carry on.  I'd read it could strengthen tongue and jaw muscles, helping speech, that if we could ever get her to feed it would draw us closer.

 Or maybe I just don't like to be beaten by anything.  (#bloodyminded)

Each bottle filled, would be labelled with my name and the time and date. They were stored at home in the fridge, before being transported in a Coca Cola cool box, that had belonged to Great Grandma, to the hospital, and put in reverse date order in a massive communal breastmilk fridge. 


Whilst in the hospital each day I had access to another, much more powerful machine. This baby really worked! What I needed was a machine fit to milk a cow. I mentioned this to a neonatal nurse, and she conjured one up from somewhere for me to bring home. It was a large blue brick, double pumping, with suction a Dyson could only dream of, and suddenly I could get double the amount of milk in half the time. Just as well, as Natty's daily requirements were ever increasing, which brought about stresses in itself. Would I always be able to fulfil her requirements.


But during my hours spent in hospital each day, a beautiful seed of the beginnings of breastfeeding began. At around 3 days old, a nurse asked me if I had heard of Kangaroo Care. I had! Delighted that our daughter was well enough for this, I prepared to give her the skin to skin contact she needed. This was when we first introduced her to the first tastes of my milk. Studies have shown that premature and poorly babies in SCBU benefit greatly from this skin contact with their parents. Quite literally the love they feel heals them.


From then on she was allowed a few minutes a day at the breast. Too weak to latch on, too tired to stay awake long enough to actually feed, still relying on the naso-gastric tube, but being introduced slowly to the mechanics of what would be her first achievement in life; breastfeeding.





44 comments:

  1. Ha ha I had that blue brick too! I ended up buying a Medela back pack!

    I love this post so much. I think it gives so much hope, that if you want to breastfeed your special care baby, there is a light at the end of the tunnel.

    Its not for everyone and that's fine, but if you want to, you can try, and you can succeed.

    beautiful beautiful post.

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    1. A back pack, WOW, that sounds pro!
      Yes, not for everyone. But the possibility is there x

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  2. What a great post.I remember crying when trying to catch the colostrum I,and hubby(?) Hand expressed. It is such special stuff.

    My little girl was born 12weeks early and weighed only 650g.I expressed for 3 months but she only got breast milk for around 7 Weeks due to gut problems and moved to prescribed milk.I kept going in the hope we would get back to breast and kept me busy,felt I was doing something useful.

    I made a couple of friends in the nicu expressing room. One mum always said off to milk the coo!

    Look forward to the next instalment.

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    1. Well done you. Every drop counts doesn't it.

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  3. Because of Daisy's problems with aspiration pneumonia breastfeeding was a big problem - I fed her, just as I fed my other 3 but she could not co-ordinate the suck/swallow she had an ng tube from day 1 until we progressed as you know to gastrostomy/jejenostomy & ultimately intravenous nutrition - but I am proud of the fact that every day for the first 6 months of her life I expressed and she had whatever she could manage of my milk via her tube. So I am proud to say that all four of mine were breast fed for the first 6 months of their lives even though Daisy got hers slightly differently!

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    1. Stephanie you are one incredible lady. Every drop counts doesn't it. x

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  4. I fed my SCBU (6 week prem) little girl for 22 mths. It took us 8 weeks to get to a feeding stage but it was worth it. She was topped up but only with my gold top for the first few weeks. It is individual and some can and some cant - and it takes a lot of persistence - but I think it was worth it for her.

    My sister also managed to feed her DS daughter until over 1yr old - she didn't have any special care issues - but it was still a battle in the beginning which she got through.

    I am glad you had good advice on the pumping and got a good pump. Those nightly pumps are important. Waiting for the next installment.

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    1. Thank you for telling your story Gaby. It is definitely a battle worth pursuing if you think there is any chance of succeeding.

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  5. Wow, you're amazing. I'm an ex pumping mummy too, though my dd1 just didn't know what to do, but doesn't have Downs. Still I expressed from 5 weeks till she was a year and I also felt like a cow (though they make 80 L a day!

    On one memorable occasion (her christening) I had pumping room written on a room at my parents' house, to give some privacy!

    I was also v pleased as DH had to treat my bottles of Ebm both ways when flying to Spain lol!

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    1. Brilliant! Thank you for sharing your experiences x

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  6. Look at that wonderful nourishing colostrum. Beautiful post xxx

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    1. Yes, I guess there is some there. Not all lost on the bathroom floor :/

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  7. I am so shocked at the words of the first midwife! I too would have been spurred on to prove her wrong. So glad the community midwives and neonatal nurses were not ignorant and much more supportive offering practical help not useless, hurtful words. I have such admiration for mums who pump for many reasons they aren't able to actually feed from the breast in the beginning and especially when their baby is in SCBU since it is so much more stressful.

    Looking forward to seeing how you and Natty get on in the next instalments x

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    1. Thank you. Luckily our midwives weren't amongst those who think babies with DS can't breastfeed. That is a myth that still needs dispelling for many.

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  8. Hi Hayley,

    I really enjoyed reading your experience and was wondering if you would share it was a broader audience. I am a Mother Supporter with the Association of Breastfeeding Mothers and wanted to know if you would consider sharing your experience in the magazine. I know that you may have just started your journey and healing process and it may be too soon but if this is something one day you would like to share please let me know as I know it would help many, many other women and families. Amy x

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    1. I would love to Amy. Writing part 2 now.

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  9. On Saffron's first night at home she fed brilliantly from me. My lack of faith in myself plus the fact that I'd done a bit of syringe feeding at the birth centre meant that I also 'topped her up' with a syringe full of colostrum I'd collected in a breast shell. Of course she puked up the LOT!

    And I will forever feel guilty about it.

    Thanks for sharing detail of what is such a fragile time. xxx

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    1. Oh bless you. we shouldn't feel guilty should we. We tried our best and They probably got some colostrum here and there. Thank you for telling me x

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  10. Thank you so much for sharing this powerful post! I hope moms who are struggling with breastfeeding will find it and feel encouraged. You did a wonderful thing for your daughter. Moms are amazing.

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    1. Thank you. I don't want Mums to feel stressed to do so, but realise it is a possibility.

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  11. Hi Hayley,
    We met at Britmums and you asked yummybambini to make sure I saw this post.
    I'm thrilled that you found a way to feed Natty they way you wanted to and that it helped you to connect to your little one. Good on you for sticking to your guns with that first midwife! It was obviously so difficult at such a stressful time, but it's wonderful that you got the support you needed eventually. As someone who pumped a lot to increase my supply (And hated every minute of it) I say a big respect to anyone who can do it for any length of time, because it was what you believed in.
    I supposed the only point I wanted to make as a bottle-feeding mum is in response to when you write you wanted 'the close bond and easy convenience that only breastfeeding can bring.' I'm sure that we can agree, having seen your experience and read some of the comments, that breastfeeding is not always either easy or convenient!
    And there are plenty of ways for mums to develop a close bond with their babies - breastfeeding is certainly one of them, but it is not the only, nor the superior one. The best way is what works for the two of you. I'm sure you only wrote it as a throw away comment, but I do feel for mums who are constantly sent the message they aren't going to have as close a connection with their baby because they aren't breastfeeding. It is simply not true - it's not held up in the scientific literature, nor when you just look around at the children around us.
    The unrelenting pressure to breastfeed is also starting to have an impact on women's mental health. I have a piece in The Times tomorrow which is looking as emerging research which suggests that pressure to breastfeed is contributing to women developing post-natal depression. (at least it should be out tomorrow - they may hold it to next week.)
    None of this is to take away from what was obviously a very bonding experience for you and Natty. I guess I'm just saying that it's horses for courses, and the most important thing to do is to find a way forward that works for you and your baby.
    Thanks for a wonderful blog post. Natty is so lucky to have you as her mum. xx

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    1. You are so right Madeleine and I wanted to avoid making such a judgement. We did learn to breastfeed in the end and it certainly became super more convenient then, but of course the bonding can happen in other ways. I am seeing first hand the stress my sister in law is going through to feed her newborn.
      I look forward to your article tomorrow.
      Lovely to meet you.
      Hayley

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    2. I also think that part of the stress that women feel, comes from the lack of decent support. Some health professionals are not only giving confuding, conflicting advice, but downright worng advice too. No consistency with midwives and inexperienced health visitors mean you can't often breastfeed even if you want to. That has got to be an area we address.

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    3. I think the computer ate my reply last night
      Yes - you are absolutely right about there not being enough support, or women getting conflicting advice about breastfeeding. Lots of the women I spoke to for the article said they felt they were being constantly told they must breastfeed, but that wasn't backed up by help. Others said they did have help but when it wasn't working and they wanted to stop they felt forced into continuing by health staff, even at the detriment of their own mental health.
      Piece not out today :( Hopefully by the end of the week.
      Take care x

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    4. hi, latecomer to this post but i just wanted to say that the pressure to breastfeed, couple with the fact that my lovely baby has never been bothered about feeding at all, had a massive impact on my first few months of motherhood. it is only now, when baby is 9months old that it's starting to get a little easier, and even now this post made me sob as i so desperately wanted to breastfeed but couldn't for various reasons.
      i found the pressure from the community midwivies especially unhelpful and actually they made me feel like a useless excuse for a mother despite the fact i was expressing every 2 hours for half an hour! i was made to feel like it was my fault that baby wasn't feeding ( the same happened at 5 months when we were readmitted to hosp because of feeding problems, but thats another story). it's taken a long time to lose the guilt, and yes, maybe pnd too.

      however many of my friends have babies and now that i'm no longer tied to themilking machine i've spoken to everyone about it and the consensus is that while there can obviously be circumstances which make breastfeeding partiularly hard if not impossible, even when baby is born healthy and on time, it' still ridiculously hard. i only know 2 women, form around 20, who had no problems breastfeeding. everyone else has struggled. we need to lose this idea that because breastfeeding is natural, that it's going to be easy. during pregancy no one even mentions that it'll probably take a while to get used to it, other than asking if i was breast or bottle feeding, the (numerous) midwives i saw didnt talk about feeding at all. and then after you've given birth they come brandishing breastmilk is bestmilk pamphlets at you! there's no preparation, mybe they think talking about potential probs will put people off but i disagree; forewarned is forearmed!

      anyway, i obviously needed to get this off my chest! do either of you by any chance kno the date the article came out in the end?
      also, downs side up, what a great thing you're doing! thanks for your blog and tireless work, i's totally inspiring :)

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    5. Thank you Anonymous. I have found it hard to write part 2 of this because I don't want it to be seen as pressure to other women. But rather support and I think that's a hard balance to strike. H x

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  12. What a wonderful piece, which feels like such a heartfelt release. Love how you notice all the detail in your beautiful picture. Birthing necklace and rich colostrum lovely contrasts to each other xxx

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    1. It was a difficult time, ad so hard to write. i still can't write part 2, how we actually got there. I'll work on it. Thank you x

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  13. Wow this brings back so many memories. Luckily we didn;t need special care but expressing for 8 weeks i know that cow feeling. Picture me sitting at the computer googling how best to express more whilst wearing a rather fetching expressing bra and a double pump! Thanks goodness my daughter figured out how t feed directly at 8 weeks, but boy that time was tiring

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    1. It's exhausting isn't it. Took us 3 months. But hey, what is an expressing bra? I think I needed one.

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  14. Oh that's a lovely post. I think faced with a feeling of helplessness I would also have grabbed hold of anything helpful I could personally do to help my baby. And you mustn't chastise yourself about the colostrum. x

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    1. Thank you Helen. Such difficult days. I find it heard to write about the next step of breastfeeding to be honest. Still, we got there.

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  15. What a truly inspirational post. I know how hard expressing a feeding a child was and he was born at 35 weeks and I was tandem feeding. That must have been so hard for you and glad you had some support.

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  16. What a brave, painful, powerful and incredible post. I'm about to have my third baby and can't wait to start breastfeeding again - I can only imagine your horror at the midwife's comment. I gasped as I read that.
    #SSAmazingAchievements

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    1. It is such an amazing thing to do isn't it, and it really gave me something to focus on in the early days when I felt so helpless. H x

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  17. Just reading this from #SSAmazingAchievements. It is such a beautiful and moving post. I really hope as you say the photo and story gives others strengths. I think those midwifes first words would have floored me.

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    1. I was floored by the diagnosis anyway, so couldn't have fallen further. The only way was up. H x

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  18. It makes me feel quite sad that I'm not surprised by the some of the treatment you had, but glad you also had support. I stayed at the hospital and pumped and cup fed solid for a week - for much the same reasons you described above. Well done you did an amazing job.

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    1. The support was indeed amazing Joy, just a few silly comments stick in your brain and colour the way you think don't they.

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  19. Like Colette, I actually gasped when I read the midwives initial comment. Wonderfully inspiring post. I am so thankful that I was able to breastfeed my three, but I have seen friends struggle and it's so important to support them. #SSAmazingAchievements

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    1. We got there in the end I'm pleased to say and there was a lot of support from those that really counted. Like you I now try to support others that really need it. Thanks for popping by H x

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  20. I can't believe the words of the midwife, at a time when you need support not harsh comments. Sounds like our doctor! I'm so glad you continued with your breastfeeding. I admire anyone that can do this. We lasted three weeks, I now know there are other reasons behind this but it doesn't help when the midwives are calling you lazy because you know you are not working well together.

    Thank you for sharing a lovely Small Steps Amazing Achievement :0)
    x

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