World Prematurity Day takes place on Sunday 17 November and is a global movement by organisations across the world to raise awareness of premature birth and the impact it can have on families. We’re joining the charity Bliss to ask families what they wish they’d known to help others going through a similar experience. We talk to Anita Hyams, William’s mum, who was supported by The Sick Children’s Trust in one of its ‘Homes from Home’, Stevenson House, when William was born at 23 weeks.
“I wish I’d known that NICU life is a rollercoaster ride.”
William arrived at 23 weeks and five days, weighing just 1lb 6oz. He didn’t breathe for 30 minutes but miraculously he had a heartbeat. Once he was stable, he was transferred to London, where the doctors and nurses could give him the treatment he needed. This was the start of our three month Neonatal Intensive Care Unit (NICU) journey.
Some days I felt helpless. Other days I was doing cares for William like changing his nappy, giving feed via a tube or reading a story and he would take my finger with all his might and squeeze it. Suddenly I felt amazing! There will be ups and downs, but remember just being by their side shows so much strength and courage.
“I wish I’d known that it’s OK to not know the answers.”
When I saw William for the first time, over 24 hours after giving birth it broke my heart. He looked so vulnerable. He was sedated, intubated and on a ventilator in a humidified incubator to stop his skin from drying out. His skin was almost translucent and looked red raw and his eyes were fused shut because he wasn’t ready to see the world. William’s life at the start was very rocky. The doctors made it clear to us that in order to survive, he needed to grow without any further complications. There was so much to take in from the very beginning.
No question is stupid, ask whatever you want. The doctors and nurses will answer honestly and explain things in a way that you can understand them. I also found that talking to other NICU parents really helped to answer some of my questions. They were such a support because they were feeling the same anxieties and truly understand.
“I wish I’d known that it’s OK to cry.”
Life in NICU is tough! Every little step your baby takes in their journey will be emotional. Cry happy tears, cry sad tears, just let it out.
“I wish I’d known that it’s OK to take a break.”
There were many tough days on NICU and we needed a break to gather ourselves and also spend time with our two daughters. From when Dan arrived in London, we were told about The Sick Children’s Trust and its ‘Home from Home’ Stevenson House, which had a room big enough for the four of us and was just a few minutes’ walk from NICU. The hardest part of NICU was leaving my baby, but I needed to take time out for to recharge physically and mentally. Having the ‘Home from Home’ gave us that space to recuperate. We could sleep in a comfy bed, cook dinner, watch TV or just sit in the lounge and watch the girls’ play.
“I wish I’d known that it’s OK to need help.”
And it’s OK to accept it. We needed help to keep our whole family together, which The Sick Children’s Trust gave us. Visits from friends and family helped us to maintain some normality in a crazy time of our lives. Being around other NICU parents helped us to feel less alone.
I received a lot of help, for which I am very grateful. If you’re a preemie parent, I hope reading this helps you in your NICU journey.
We give families with a seriously ill child in hospital a comfortable place to stay and a friendly ear to listen in one of our ten ‘Homes from Home’. Providing families with somewhere to stay together just minutes from the hospital means that they can be by their sick child’s side and have one less thing to worry about.
To give a family with a premature baby in hospital a place to stay in one of our ‘Homes from Home’, donate £30 today.
