Mandy Marsden

Top tips for medical staff dealing with parents in NICU
  1. Expect the unexpected

This is a complete rollercoaster for us, nothing could ever have prepared us for the situation we’re in. Some people seem calm and steady, others manic and terrified, some will swing between both. Our behaviour and reactions might be unpredictable. We’re doing our best to hold it together.

  1. Assume nothing

A NICU mum might be a nurse, but all logical thought and experience might go out of the window when it’s her baby who’s the patient. A parent who appears to be calm and taking everything in might be a ball of anxiety underneath. The mum who seems to be in another world when you’re explaining crucial information might be entirely present but overwhelmed.

  1. Don’t use jargon unless we do

I’ve had doctors and nurses ask me if I’m a medical professional because I seem to “speak the language”. I use medical terminology where I know it and it’s a signal to doctors that I have a good understanding of my son’s conditions. However, I only got to that stage because incredibly patient staff explained everything to me. Follow our lead.

  1. Ask us what we want

Some parents cope by only knowing the bare minimum – are we in immediate danger, which body part is causing trouble. Others want to know the name and purpose of every drug, procedure or condition. Both are entirely valid and motivated solely by what’s going to get us through each day without breaking down.

  1. Sometimes we’ll break down

This must be uncomfortable for you and might happen when you least expect it. I once sobbed on a ward round and the consultant said “Why are you crying, I’ve just told you you can go home in a fortnight?!”. He was unaware that my morning had started with having to throw away precious breast milk due to problems at the hospital accommodation I was staying in.

  1. Breastfeeding is incredibly stressful

Even for a mum who always planned to breastfeed her children, trying to do so in the NICU environment is nightmarish. Privacy, anxiety, trauma, grief – all these things can impact a mum’s ability to produce or even keep up with the expressing schedule. Be gentle.

  1. We want to feel like normal parents

We want to be included in decisions, we want to be involved in our baby’s care. Most parents will struggle to come to terms with parenting through an incubator. Every day we are dealing with not being able to pick up our child, tend to their every need. We want to do everything we can. Enabling us to be as involved as possible in our children’s care will build trust between us, and support our well-being.

  1. We need hope

When your baby is in intensive care, out in the world months before they should be, it can be very difficult to think positively. But parents need hope in order to keep going. Parents who celebrate every tiny milestone, or talk about going home at every opportunity aren’t necessarily unrealistic or unaware of the precariousness of their situation. They may well just be hanging on to whatever hope they can find so that they can keep functioning and keep supporting their baby.

  1. Discharge is wonderful but daunting

Hearing that your baby is about to go home should be thrilling and welcome news. But it’s also notice that you’re about to go from having 24/7 expert medical care to nothing. You’re taking home your baby, but perhaps with oxygen, feeding tubes, medications, equipment. And you’re doing it alone. Prepare us as best you can, and understand if we seem apprehensive.

  1. Remember that we’re all individuals

This is really the point that sums up all of the above-each of us have individual requirements and wants and our journeys are as unique as those of our babies. Accept our differences, respond to our changing needs, and be patient with us.

We’ll get there, with your help.

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Thank you to Lottie King of Leo’s Neonatal for working with Mandy to produce this article.

Leo's Neonatal

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