‘What I wish I’d known…’ Jessica’s story

Rebecca and Lee Shannon were supported at Chestnut House when their daughter was born at 27 weeks

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. The Sick Children’s Trust is joining the charity Bliss to ask families what they wish they’d known to help others going through a similar experience. We talk to Rebecca and Lee Shannon, Jessica’s parents, who were supported by The Sick Children’s Trust in one of its ‘Homes from Home’, when their daughter was born at 27 weeks.

“I wish I’d known more about pregnancy complications.”

Lee and I wish we’d known more about pregnancy complications in general and what happens in the event of them. Our midwife was fantastic and it was her that spotted the signs and sent us to hospital, but we weren’t warned of any signs prior to that (although maybe they wouldn’t want pregnant mums to worry).

I owe my life, and my daughter’s, to the midwife who saw me when I was 27 weeks pregnant. If she hadn’t sent me to the hospital, both us of would’ve died. I’d describe my pregnancy as easy. There was no indication that Jessica would arrive early – let alone three months ahead of schedule. The midwife had noticed that my blood pressure was seriously high and admitted me to Hinchingbrooke Hospital, in Huntingdon. I felt fine until it increased to the point I was verging on a stroke. After a night in Hinchingbrooke, I was rushed over 20 miles away to The Rosie Hospital, Cambridge, where I was prepared to give birth to my daughter. I was told that I had two pregnancy complications (Pre-eclampsia & HELLP syndrome) and that Jessica’s growth was restricted. Four days after being admitted to hospital I was rushed to theatre for a caesarean and Jessica was born. She was taken straight to the Neonatal Intensive Care Unit (NICU) while I was taken to the close observation unit. I then developed sepsis and was very ill and had to have lifesaving bowel surgery. 30cm of my large intestine was removed and I spent a period of time in intensive care.

“I wish I’d known about NICUs and the enormity of having a premature baby in one.”

We didn’t comprehend the severity of the situation. Having a premature baby is a whole different world to having a full term baby, which is something we wish we’d known.

Jessica was so small. She was just 760g and only 10 inches long, the size of a small teddy bear. Heartbreakingly, I didn’t get to see or hold her because I was so ill and over the next four weeks we were often apart. We faced the toughest times of our lives as a family. While Jessica fought for her life, I did too. Our lives were often in the balance and Lee was at a loss. He must have travelled over 1,500 miles over that month from our home to the hospital and back again to be with us both. For him, it was exhausting and unbelievably stressful not knowing what he’d be arriving to every morning and unable to get to us in the night if anything happened.

“I wish I’d known about the help available from charities like The Sick Children’s Trust.”

Recognising my health situation, my consultants and the nurses on NICU got in touch with The Sick Children’s Trust. The charity provides free accommodation and emotional support, giving parents a place to stay close to their poorly children. Because Jessica was so ill and I also wasn’t one hundred percent better, the charity gave us keys to a room in Chestnut House. It was literally two floors below the ward I’d been in, and where Jessica was. We had our own bedroom, with an en-suite, access to a kitchen to cook meals and a living room to have a cup of coffee and take five minutes in. Above all else, it was the closeness to NICU and Jessica that made the real difference, reducing our stress levels and taking away our concerns. I was no longer worrying about Lee travelling all those miles alone, and he wasn’t worried about us. It was so reassuring to know our little family was under the same roof, albeit a hospital one.

“I wish I’d known that there is a massive support network when you have a premature baby.”

Not only are the staff in NICU an incredible support by structuring your expectations all the way through, keeping you fully informed each and every day, the families you meet at Chestnut House are amazing. For us, one of The Sick Children’s Trust coffee mornings was a great way to meet people that had already been through our situation and came out the other side, so to speak. We were in the midst of our darkest days, but meeting the mums and dads who had been there and were now playing with their toddlers who had been where Jessica was gave us the hope we needed.

There’s nothing quite like meeting people who understand you and your situation which is why living somewhere like Chestnut House is so emotionally supportive. Whilst there we met numerous families in the same situation as us, one of which has continued as a very close friendship.

“I wish I’d known how much we could be affected by the situation.”

While Jessica was poorly, Lee and I were so focused on being strong for her that I don’t think we fully realised what we were going through – so now we are trying to resolve the trauma we’ve experienced.  18 months on and this still has an effect on us, mainly me, although having counselling has helped to ease the pain but it’s far from over.

It would’ve helped, we think, to have all the information we needed to hand which directed us to the right websites to access the help we needed. For now though, we are just grateful to all the staff at the hospital and The Sick Children’s Trust for all their help and are embracing all the moments we have with our gorgeous little girl.

“I wish I’d known how well Jessica would do.”

It’s been a long road we’ve travelled, with many scares and hospital visits. Remarkably, Jessica is doing really well. Despite coming home on oxygen, she’s now off it a year later and is doing much better than we expected.

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.

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