Fixing the future, listening to parents

As we continue to listen to the public sharing their experiences of care provider healthcare professionals with rich insight, Shelley, a parent and educator, and Fixers UK, a charity for young people using their past to fix the future, have worked together to create a powerful film sharing how challenging a stay in neonatal and intensive care can be for parents:

Shelley reflects on the birth of her daughter:

I wrote in my notebook on 11 April 2004, the day after our daughter was born: ‘It is 3 a.m now, which is always the toughest time for old folks and newborns.’

Our daughter had been born prematurely at 27 weeks and was in the neo-natal intensive care unit, held in a small hammock, to protect her delicate skin from bruising.

My mind was racing, wondering about her realistic chances of recovering from the impact of her premature birth.I couldn’t speak, I was overwhelmed by fear and anxiety. I wrote:

‘I want you to be a fighter.
I want you to be a strong and determined person.
I fought so hard to keep you inside me, I did as much as I could. But not enough.
I took all the injections the clever doctors could offer me.
But you have got to fight hard now because as odd and unexplainable as many things in the world are – there is so much great stuff to see and do here!
I want you. I want you to be able to achieve your potential as a human being.
I want you to be feisty and creative. And happy in and with yourself.
I want you to have friends, treasure hunt birthday parties and to travel to see the amazing world you are in.
I want you to read these thoughts one day, at your graduation or your wedding canopy and for you to be an accomplished young woman – aiming high.
And for you to say: ‘Thanks Mum, was it really terrifying when I was born?’
And I will look back…
And I’ll have got involved in some kind of research…
Helping doctors and families to understand how to handle themselves emotionally when they are dealing with a baby who is so premature.
And you will be like all the other 27 weekers that I keep hearing about.
Fine. Happy. Healthy.’

Our daughter’s recovery was not straight forward. We spent time in four different units and although the medical staff were fantastic and always tried to do the right thing for her, they didn’t seem to be aware that they were using confusing medical jargon.

I think there needs to be greater awareness that a premature birth can be a very distressing time for parents, and better communication could help make things a bit easier.

Since our daughter’s birth, I have been motivated to find ways to help medical professionals and families to understand the complexities they all face, in Neonatal and Paediatric intensive care units.

Working with the talented Fixers team, a terrific charity which supports people who have a desire to highlight an important issue, my diary notes have been set into a short, dramatic film to encourage hospital staff to appreciate what families go through and be there to offer reassurance in language they understand.

The film shares some of the experiences most pertinent to me during the time our daughter was hospitalised. If you are connected to a family in intensive care or inpatient area, either personally or professionally, I hope you find this film helpful.

Our daughter is eleven and has just started secondary school and I feel incredibly privileged, it is without a doubt due to the excellent care she received from dedicated NHS professionals who have given her the opportunities to fulfil her purpose in the world.

Can you help us create conversations with staff across the NHS to reflect on the language used, and consider how we continue to involve families making conversations about care accessible?

Shelley Marsh

Shelley Marsh is an educator and parent with an interest in making care accessible.