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 are joining the charity Bliss to ask families what they wish they knew to help others going through a similar experience. We talk to Alice Story, Freddie’s mum, who was supported by The Sick Children’s Trust in one of their ‘Homes from Home’, Crawford House when her son was born at 28 weeks at Newcastle’s Royal Victoria Infirmary.
“I wish I knew what to expect that premature.”
We never thought that Freddie might arrive early. It was just something we never considered.
It was a complete surprised when he was born at 28 weeks, weighing under three pounds. That morning I thought I had Braxton hicks, by the afternoon I had given birth.
Freddie wasn’t breathing when he was born but thankfully the doctors helped him to take his first breath. As soon as he did, he was rushed to the Special Care Baby Unit (SCBU) accompanied by his dad, Joe, while I was taken to theatre.
Everyone dreams of the moment your baby in placed in your arms, with your husband by your side arms wrapped around each other for that first family photo. What we experienced was far from that.
It was a shock when we were told that the aim was to get Freddie home for his due date, which was 11 and a half weeks away. It seemed like a lifetime. How were we going to manage with the journey, travel? Would we be able to stay with him? Where would we stay? To have known at this point that there was support from The Sick Children’s Trust, the charity that gives families a place to stay close to their seriously ill child, would’ve given us one less thing to worry about.
“I wish I knew babies born at 29 weeks could survive.”
Freddie had a lot of breathing difficulties – this was the main issue he faced throughout his time in hospital. We had no idea if a baby born at 28 weeks could survive and what they’d have to experience to pull through. It was overwhelming seeing Freddie motionless and covered in wires. This wasn’t how I’d pictured his first precious days. I was so worried about knocking something or even touching him as he seemed so fragile and small. But preemie babies are robust and he was a strong little boy.
“I wish I knew that I didn’t ever have to worry about being separated from Freddie or my husband.”
Our biggest fear was being separated from Freddie while he tried his hardest to get better. We both felt helpless at different points and it was really hard for Joe. It is tough for dads of premature babies as the focus is on the mother-baby bond – breastfeeding and skin-to-skin contact. If we hadn’t been given a place to stay, Joe may have felt isolated. I would’ve also really struggled without him. The Sick Children’s Trust gave us a place to stay at Crawford House which is in the hospital grounds at Newcastle’s Royal Victoria Infirmary. This allowed us to be with Freddie day and night until he was well enough to come home. We were by his bedside for hourly tube feeds, daily blood tests and transfusions. We were there through every terrifying and wonderful moment because of The Sick Children’s Trust. Crawford House is a strange place. It’s beautiful and what you need, but you no one necessarily wants to be there. Everyone from the cleaners, to the staff and other families are amazing. There’s a united front and it brings you strength.
“I wish I knew that someone else’s experience would get us through ours.”
You can’t plan for a premature baby, but meeting people in a similar situation really helped us find our way through the uncertainty. We met some amazing families at Crawford House, just over a cup of tea or while making dinner. Everyone would ask after Freddie and ride the ups and downs with us. People listen to your problems every day, even if they’re going through something worse. I remember when Freddie had a blood transfusion and another parent reassured me that he would be fine, her little one had had a couple. If we had been at home we wouldn’t have received those comforting words which made something that was so scary and unordinary seem almost normal.
We were there every day by Freddie’s side, which was incredible and I look back and often think about how hard it must have been for Joe. Those moments after Freddie was born, not knowing what was going on and seeing everything. When I was being taken care of and he had to go with Freddie and leave me alone. There was nothing he could do and he found that very hard. Something that has helped Joe was speaking to a nurse on SCBU who told him about a dads’ group. Joe attended that and found it really useful – he knew he wasn’t alone. He now goes and shares his experience with dads who are now going through what we did.
“I wish I knew what I know now.”
I know now that if I have another child, I would go straight to the doctors or hospital with any signs of contractions. I also know that if Freddie was to become seriously ill again that I would feel safe in the knowledge that The Sick Children’s Trust would do its best to support me and Joe with a place to stay. It meant the world to us. We could be parents. I could feed Freddie at any time of day or night because we were just a short walk away at Crawford House. It costs The Sick Children’s Trust £30 to support a family for one night in a ‘Home from Home’. Earlier this year I ran the Great North Run to thank the charity and raised £1,000. I know this money will go towards supporting another family which is an incredible gift to give – especially as Freddie comes on leaps and bounds and we celebrate all he has achieved.
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.
