A parent's perspective: meet Gabriella
24 Aug 2018, 8:51 a.m.
Gabriella was only three months when she was first brought to GOSH for life-changing treatment. Sarah, Gabriella’s mum, shares their story and her reflections on being a parent at GOSH.“The first time we knew there was a problem was when she was born – Gabriella wasn’t breathing. We spent the first five and a half weeks of her life in a neonatal intensive care unit. It was traumatic and unexpected – we didn’t know if our little girl was going to survive.”
“We were quickly referred to GOSH. Gabriella has cerebral palsy, a condition that causes motor impairments and development delays. As well as feeding, it affects her ability to speak and move. On our first trip we discussed replacing her feeding tube with something more permanent. We were feeding Gabriella through a tube from birth and at the time she had a tube down her nose, past her throat and into her stomach.”
In good hands
“Coming to GOSH felt very overwhelming. You’ve heard of the hospital and you know it’s for really sick children, and you don’t expect that you’ll ever need to visit as a parent. It was scary, but reassuring to know that we were in good hands.”
“GOSH is such a welcoming hospital. It’s brightly coloured, there are pictures everywhere, and volunteers to help you find where you need to go. Having the sensory room in the ward is wonderful. Gabriella absolutely loves it – she rolls around on the mat and loves the fibreoptic lights. It’s not a medical environment, so you can just sit there and have fun without beeping machines. It’s a lovely space.”
Making decisions together
“It’s helpful talking to other parents going through similar situations – everyone’s in the same boat. The most important thing to do is to be brave and trust yourself as a parent – you know your child better than anyone. We were nervous to begin with, but as time has gone on and I’ve got to understand the demands of Gabriella’s condition better, we’ve become more confident.”
“If you’re informed, you can have a proper discussion with the staff, who can always give you a little more to time think about any decision you may have to make.”
“Gabriella’s most recent operation wasn’t a success, but we’ve made the decision to move her onto a blended diet, which has made a huge difference to our home life because it helps her to tolerate food much better. If feels like I’ve got a new daughter – she’s infinitely happier, and we’re getting something resembling a more human level of sleep! We’re a dramatically different family, and I’m very proud of us for making that decision.”
“I don’t think there’s a GOSH parent out there that could manage without the support of the Charity. I’m so grateful to the people who help us. Truthfully, we didn’t expect to be this kind of family. We didn’t expect to enter this world. But while you don’t want to be in this situation, once you’re here, it’s an amazingly supportive place to be. You see the very best of human kind, you really do.”
By supporting the summer Pioneer Appeal, you can help to fund potentially life-changing research projects and give children, like Gabriella, the chance of a better future.