As part of the campaign, Bliss Scotland is calling for urgent intervention from the Scottish Government to provide financial support for parents who are on neonatal units today, and who are facing increased costs as a result of their baby’s stay. Find out more and support the campaign here
This blog was written by Dr Nashwa Matta, Associate Specialist in Neonatology and Child Development for NHS Greater Glasgow and Clyde.
Double Jeopardy: “The subjecting of a person to a second trial or punishment for the same offense for which the person has already been tried or punished.”
Double Jeopardy is what comes to mind when I think of what some preterm and sick babies and their families have to go through. I was put once in a role play, imagining I was one of the babies in neonatal intensive care that I was looking after.
I was so distressed by the isolation in an incubator, seeing how anxious my parents were, and my ten year old brother crying. I felt trapped with the unpredictability of my situation: what is going to happen to me next? Is everyone opening the door of the incubator going to hurt me, or do something unpleasant?
I learned quickly to relax when I know my parents are near, I can distinguish my mum’s smell, her touch is so comforting. I love the voice of my dad reading and singing to me, it helps me to trust the world around me again, sleep better, grow and feel comforted and secure. My mum’s smell that I recognized from the fluid that was around me in the womb helps me mask the unpleasant smells of alcohol gel, humidity, wet and dirty nappies. My mum’s soothing touch counteracts the heel pricking and other painful procedures I have to endure to get better. The taste of my mum’s milk is so sweet, so there is more to mouths than suction and intubation then! This was not supposed to be my world; I should be home with them. Everyone is doing what they can to make sure I am alright. But are they?
A few weeks have passed now, and where are they? Dad is back to work, I miss him. He comes at 3am when I am asleep as he is a truck driver, he has to go to other cities and he drives all night. Mum, I miss you, you have to do school runs and look after my disabled brother. I know finding a parking space here is a problem, and to stay with me for long time can cost up to £10 per day - money you don’t have. As dad is working, no one is helping you mum with child care or financial help. Please don’t cry mum, I know you love me and you want to be with me, we are both being punished twice for the same thing - being born early. It is not your fault. I wish I could speak and shout out - someone, please HELP!
This is a true scenario of a baby in NICU, seen through their eyes.
Research has shown the importance of parents being with their babies while they reside in intensive care. It helps brain growth, future development, helps maternal mental health, and helps build a secure attachment between the infant and the primary carer.
Centralising neonatal care means parents being away from home for long periods that can extend to many months, away from their social network that supports them, dads having to go back to work, siblings not knowing who is going to care for them from day to day – an impact on the whole family. Parking charges are just one clear example of how the financial impact of having a premature or sick baby impacts on parents.
That’s why I’m supporting Bliss Scotland’s Families Kept Apart campaign to improve facilities for families on neonatal units. Parents should be supported to be with their baby and action needs to be taken both now and into the future to achieve this.
Empowering parents through knowledge and by being involved in their baby’s care is crucial, but are we making parents feel guilty if they can’t do so for reasons they can’t control?