Ada's Story

“We remember the day we met our Roald Dahl Nurse Scott. He listened to everything we’d been through, and everything we knew about Ada’s condition and what might be next and then he told us what he could do to help. We went from seeing two specialists to having 14 different specialists involved in Ada’s care and we just didn’t know how we were going to manage. But Scott brought it all together, contacting the different doctors on our behalf and making sure we got what we needed at the right time. It was such an enormous weight off our shoulders. He’d be there to answer questions or chase up things we needed. And we could focus all our energy on caring for Ada.” 

When Joanne and Kyle's first baby Ada was born in the Spring of 2024, they were told she had a cleft palate, a little heart defect and talipes on her feet and were advised the hospital was going to run some tests.  Those first three weeks – nothing like they’d imagined they would be as new parents – were spent monitoring their daughter in NICU, the first two days while Ada was on oxygen.  When the couple finally got home, they thought they understood everything - and that everything would be fixable and fine, bar a cold - baby bronchiolitis.   But back in hospital for an outpatient appointment with a surgeon to discuss the cleft palate the doctors in the room were assessing Ada and realised something wasn't right.   “She was, we thought, just a bit lethargic but they sent us straight to A&E,” remembers Joanne. “From there ENT were called and checks were made on her airway, and they decided to keep us in overnight. Ada didn't stop crying and she didn't sleep and when they checked on her in the morning her oxygen levels were right down. I will never forget that moment they grabbed Ada and literally ran to theatre to give her an emergency tracheostomy. It was so shocking.” 

Soon afterwards, Joanne and Kyle were told Ada has a genetic condition and one of the outcomes is the tiniest airway possible. And the hospital was able to diagnose Bronchomalacia (a problem with the cartilage in her lungs impacting on breathing), Pierre Robin (a rare birth defect characterized by an underdeveloped jaw, and a backward displacement of the tongue and upper airway obstruction), and displaced hips.    “All we can think was we were lucky to be in hospital that day talking about the cleft palate,” says Joanne. “That we were with doctors who acted so quickly and who saved her.”  Meeting Roald Dahl Nurse Scott The family have been back and forth to hospital ever since, and it was last summer they met their Roald Dahl Nurse Scott, just as they were feeling overwhelmed by the idea of liaising with the 14 different specialists now involved in Ada's care, and all the questions they had for each and about what would happen next. 

“He listened to everything we’d been through, and everything we knew about Ada’s condition and what might be next,” says Joanne. “And then he told us what he could do to help and about the charity and how they could support us.   “He was with us for hours and listened to everything on our list and in my head about the tests and results and what needed to be done,” says Joanne. “And he was making his own list - of things he could find out, and things to check if he didn't know the answer."

Joanne continues, "By the second time we met him we knew he was the best person to have in our corner. All the nurses and doctors are wonderful, but we were still trying to figure out how everything works, and what Ada needed and what we needed to do to help her. We had so many things to check and follow up on, so many different elements of care. It just felt so much, and to have this Roald Dahl Nurse take over and co-ordinate everything was just so amazing. We felt we could ask him anything. Talk to him about anything.”  It not only helped us with the clinical side of things, explains Joanne. Scott also talked them through the emotional and practical support Roald Dahl’s Marvellous Children’s Charity could provide – from disability allowance to counselling when Ada was in critical care. And – when they did finally come home for her first Christmas – Scott liaised with the community team on her ongoing care.   “His background knowledge – detailed knowledge of Ada and where she was and what she needed – was just amazing, and just what the community team needed, too,” says Joanne. “Scott was so passionate about Ada and her care, and so supportive of us – so reassuring when we were feeling lost or low. He is simply the person you want on your side. I don’t think we could have done it without him. We are here now with our beautiful, sassy, smiley and determined daughter. But we really do believe if Scott wasn’t with us, Ada would have been in hospital for much longer. We can’t thank him – or the charity – enough for his support.”    Roald Dahl's Marvellous Children's Charity works to establish vital Roald Dahl Nurses in hospitals across the UK, to provide specialist care for families like Ada's. If you would like to find our how you can support Roald Dahl's Marvellous Children's Charity please visit: https://www.roalddahlcharity.org/donate/