We could support each other when our world was crashing down
My daughter Darcie was born on 31 July with gastroschisis which meant her intestines were outside of her body and she also had colonic atresia; a gap in her large intestine. She had surgery hours after she was born and was given a stoma, an external opening for her intestine to help her bowels work properly.
It was a difficult time for us as, although Darcie was stable, between August and November she had two further operations and on 10 November she required another operation, a stoma reversal. It was shortly after this operation that she began to deteriorate.
Darcie caught a respiratory virus called which meant she needed to be transferred to Paediatric Intensive Care Unit (PICU) and by the time she arrived here, she was really quite sick.
Darcie was having to work extra hard to breathe as the virus had affected her lungs, and the stoma reversal operation had put her digestive system under intense pressure and was taking time to work. Stool and gas were unable to pass properly because her large intestine had never been used before and it was actually thinner than her small intestine.
She looked awful and it was incredibly heart-breaking to see her like that. She needed a lot of help breathing as the respiratory virus was also affecting her stomach and pushing her diaphragm further up her chest. With so many complications, the surgeon decided it was best for Darcie to have emergency surgery to put the stoma back in.
During this time we stayed at Guilford Street House, accommodation run by the charity The Sick Children’s Trust. Darcie’s dad, Lewis, initially stayed at Guilford Street while Darcie had her stoma reversal surgery, and I slept on the ward with her. But after this, when Darcie deteriorated and needed to be admitted to PICU, I could no longer stay by her bedside as she was too poorly. Guilford Street was crucial as I could stay there with Lewis, knowing I was still only a few minutes away.
We cannot express just how much staying at Guilford Street helped us. It meant I could be there for Darcie and Lewis could be there for me, all because we had the support from The Sick Children’s Trust. We were able to be together when we needed to be the most and I never felt alone. One night Lewis went home, but my mum was able to stay with me which meant so much.
Tina, the House Manager, is truly amazing. I’m not sure I’ve ever met a better person. She could instantly make us smile and is unbelievably kind and heart-warming. I cannot praise or thank her enough for helping us and all the other families she supports and I’m so pleased that we’re still in contact now.
Guilford Street House meant we could leave Darcie in PICU and have a meal together in the kitchen as a couple which provided a sense of normality. We could sit together and talk about Darcie in a place where everyone understood. Everyone in the house was going through the same thing, all living together because their child was sick in hospital and needed care.
Thankfully, Darcie’s stomach became flat and eventually she overcame the virus. She came out of intensive care and back onto a ward that wasn’t quite so high dependency and we had a total of ten weeks in hospital before we went home.
Darcie was eventually discharged after 115 days in hospital. We’ve since been back to Great Ormond Street Hospital for Darcie’s seventh operation as unfortunately her stoma had prolapsed, meaning her intestine was visible from outside her body. The doctors stitched her intestine to her abdominal wall to prevent another prolapse and we’re currently enjoying being at home until her eighth operation which is due to take place later this year.
Because The Sick Children’s Trust helped us so much we have fundraised for the charity to say thank you. Thank you for allowing us to be together and support one another when we felt our world was about to come crashing down.
It’s such an amazing thing that The Sick Children’s Trust does for parents and families like ours, and we will be forever grateful for that.
Having supported countless families with children needing transplants over the past four decades, we remain determined to ensure that the subject of child organ donation continues to be discussed. In support of NHS's Organ Donation Week 2023, a trio of families have kindly shared their transplant stories.
Organ Donation Week 2023: After suffering heart failure last year aged one, Amelia Bolter has been a patient at Great Ormond Street Hospital since October 2022, waiting for a donor heart to become available. Amelia's mum Jodie - who arrived at Guilford Street House heavily pregnant but now has eight-month-old Blossom in tow - shares their story.
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