Why expressing and breastfeeding peer support on the neonatal unit should be delivered by lived experience!

This week is World Breastfeeding Week and there is lots of talk and raising awareness of breastfeeding. We want to raise awareness of the challenges of breastfeeding for the mums with babies in neonatal care. And the need for more investment in peer support via lived experience on the neonatal unit.

There are some fantastic peer support groups and services for breastfeeding mums, particularly in the community.
But unfortunately there isn’t a huge amount of lived experience peer support available for mums who are expressing breast milk for babies in neonatal care.
When we are talking about lived experience peer support, that doesn’t necessary mean someone who has breastfed a baby, or someone who has expressed breast milk. Of course breastfeeding any baby can be extremely challenging for mums regardless of if there baby is on the neonatal unit. We recognise that and massive respect to those who continue to breastfeed their baby despite the challenges their breastfeeding journey presents. But unless you have lived experience of expressing or breastfeeding on the neonatal unit it really is impossible to understand or relate to mums who are on that journey.

Often mums have limited contact with their baby in the first few days or weeks of neonatal care. If babies are particularly unwell or unstable it may be very difficult for mums to have skin-to-skin. And sometimes the only contact is touch through the portholes of an incubator. Yet we still expect our bodies to produce those all important golden drops of colostrum. The pressure is huge!

We are told to hand express initially. If you have hand expressed you will know the hand cramp that comes with it. You will understand the indignity of desperately trying to squeeze tiny drops of the golden stuff from your breast whilst your partner, or a health professional tries to catch the drops with a syringe. Even though you struggle to get your head around the fact that the couple of drops might make any difference!
Unless you have experienced that, you couldn’t possibly get it.

After a few days you might get introduced to the pump. And that is where the obsession with time can kick in. We’re told to express 8-10 times each day and most mums will interpret this as every 2-3 hours. Mums are literally panicking if they go over the 3 hour rule. Setting the alarm to wake you to pump every 3 hours through the night. Sitting in the darkness without your baby but still pumping to keep the milk flowing. Waking up to sore boobs and soaking wet from the leaking milk and there is no baby to put straight to the breast. So you have to get the pump going, get the milk flowing. Then you have to store if safely until you take it the neonatal unit the next day.
You couldn’t know how this feels unless you have been there!

Another challenge is actually fitting expressing in to your day. Balancing home and hospital, keeping yourself fed and watered. Travelling to and from the hospital. Trying to do as much for your baby as possible whilst you’re on the neonatal unit. There simply is not enough hours sometimes and fitting in expressing can be super challenging. The dread you might go over the 3 hours and then you beat yourself up and feel guilty. Or someone else inadvertently puts the pressure on you or says the wrong thing. So you feel worse and even more like you’re not good enough.
Unless you have experienced it, you couldn’t possibly get it!

The hardest and most heartbreaking challenge expressing mums may face is when you just don’t get enough milk. Despite all your efforts and the hard work. Nature deals you a rough hand and you feel desperate. You’re searching Google for things you can take, eat or drink to boost your milk supply. Someone tells you to eat oats (there is no research based evidence around this) so you stock up on porridge or flapjacks in desperation. Or you spend money on lactation cookies (again no research based evidence). You drink enough water to make you feel your bladder might burst. But you try and you keep trying until you can’t try anymore. You feel the pressure from everywhere and no one puts the pressure on you more than you do yourself, It is soul destroying. It is hard, but unless you have been there, you couldn’t understand that!

Sometimes mums stop expressing. For lots of different reasons. You may have only decided to give your baby breast milk because they are in neonatal care, it might not have been part of your plan. You may be completely disheartened by a low milk supply and feel like you just can’t do anymore. Your baby may need to be tube fed in the long term, have additional needs and/or need prescription formula, leaving you with little choice about how you feed your baby. You may just have had enough of being attached to a pump and feel like you can’t bear to hear another minute of that distinctive noise that breast pumps make.
We understand how painful those difficult decisions can feel.

The staff on the neonatal unit and in maternity are fantastic at supporting and encouraging mums to express breast milk. There are some wonderful infant feeding teams. And they are supportive, knowledgeable and compassionate. We wouldn’t get through the expressing and breastfeeding journey without them. They encourage you and teach you the tools and tips to help. They know their stuff there is no question about that. But they haven’t necessarily have had their own neonatal expressing or breastfeeding journey. They don’t really full understand how difficult it can be. You couldn’t possibly with the best will in the world.

We often talk about how peer support should be delivered by those with lived experience and this couldn’t be more true on the neonatal unit. No one will ever understand what it feels like to have a baby in neonatal care quite like someone who has walked that path themselves.
No one will ever understand what expressing for a baby in neonatal care feels like, unless you have done it. No one will ever understand the challenge of trying to breastfeed a baby with nasal prongs and a feeding tube in place, unless you have done it.

All our peer supporters have lived experience of neonatal care, we don’t think you can deliver peer support in neonatal care without lived experience. They have a unique insight into how parents are feeling and can demonstrate genuine empathy. They have knowledge and experiences that they can share to help others. It’s invaluable!

Some of our peer supporters have completed an accredited breastfeeding neonatal helpers course. They are all mums who have lived experience of expressing breast milk or breastfeeding a baby in neonatal care. They truly understand the challenges and the pressure it puts mums under. Now they also have the researched based knowledge and skills that they can share with mums as part of their peer support role. They can validate the feelings of being overwhelmed and demotivated and they can use their skills to help motivate and mums when they feeling like giving up. We are planning to expand on this and offer breastfeeding training to more of our peer supporters. To upskill them to better support mums, by the cot side at exactly the time they need it!

Make no mistake peer support is no replacement for the wonderful support we get from neonatal teams and other health professionals. But it has it’s place. It compliments other services and we would like to see more investment into neonatal peer support.
But please let it be lived experience peer support!

Find out more about becoming a Spoons neonatal peer supporter

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Below are some resources that expressing or breastfeeding mums may find helpful

UNICEF – Expressing breast milk on the neonatal unit

The Breastfeeding Network

Le Leche League GB

The National Breastfeeding Helpline