Earlier this year the Neonatal team at Leeds Children's Hospital led a fundraising campaign alongside parents to fund Beads of Courage for some of the tiniest babies they care for.

Now, thanks to everyone who came together to support their fundraising efforts, babies like Mia and her family are benefitting from the internationally renowned not-for-profit programme that helps children tell their stories through colourful beads, each one marking a moment of courage or hope.

Mia's mum shares her story and how the Beads of Courage on the Neonatal Unit have made a difference to their stay in hospital. 

"After having fertility issues to have our now two and a half year old, we never thought we would have another child. In October 2024, not only did we find out we were pregnant, but that we were expecting a baby girl to complete our family.

"We were still adjusting to our little surprise, telling friends and family, and imagining our life as a family of four. However, at our 20-week routine anatomy scan, alarm bells started to ring. A few weeks later we returned, and the scan was repeated and we were referred to foetal medicine for more detailed tests.

"When we arrived, we were met with two consultants and a team of medical professionals. We were told that our baby girl had the absence of full stomach and we needed further tests, at this point we knew it was something more serious. Over Christmas we waited for results of genetic testing and wondered if our little girl would even make it. The pregnancy was already high risk, I was at high health risk, and baby girl was at an even higher risk. We were put on bed rest in the hope the pregnancy would continue. It just became the most heightened, anxious, terrifying time in our lives and every day was just so unpredictable.

"Tests results came back and everything was thankfully, good news. It was thought at this stage our girl had suspected Oesophageal Atresia and Tracheo-Oesophageal Fistula, but only at birth would we know the extent and impact this had on her.

"We continued with bi-weekly visits and met with surgeons and the NICU teams prior to birth to discuss possible options. We read and researched. We stayed positive. It was planned to induce me at 37 weeks due to having excess amniotic fluid, but at our last appointment at 36 weeks, it was discovered I had pre-eclampsia, and I was immediately admitted to hospital. Even earlier than planned, our beautiful baby girl Mia arrived safely in the world at 36 weeks 3 days, via emergency c section, and was immediately taken for tests and scans. 

"Mia was admitted to the intensive care unit for 9 weeks in preparation for surgery to close the gap in her oesophagus. Mia had 24 hour care and a repogal tube was placed down her nose and throat to allow the suction of secretions every 15min, to stop her choking, and to stop fluid from entering her chest cavity, heart and lungs. 

 "In May Mia had surgery and was then transferred to the Neonatal Unit. We have spent more than 11 weeks here. The days are long, good days are still challenging and the everyday becomes a blur. We can't tell you what the Beads of Courage have meant to us, and what they will mean to Mia as she grows older. This is such a wonderful way to remind us of her journey, and of our journey as a family.  It is the most beautiful sensory representation of her journey she can see, touch and feel for herself when she is older.  Each bead will tell her a piece of her journey to recovery; the good, the not so good, the memories and the milestones. 

"For me, each week, taking a moment to collect her beads; was a chance connect, to reflect, but also to remember she is one step (one bead) closer to coming home. For us, it's Mia's story, it's not smooth sailing, it's a bumpy ride but it's a story of courage & strength, of determination and the challenges she has already overcome, it's a beautiful reminder. 

"Thank you to staff, the Leeds Hospitals Charity and parent led fundraising for securing some of the much needed funds for Beads of Courage for patients and families like us. It's so heartbreaking to think without further funding, babies and families in NICU wouldn't have the beads of courage and be able to remember and tell, their stories in such a beautiful way."