Mila was born at 26 weeks with a hole in her heart. She spent 22 weeks in the care of Bristol Children’s Hospital, being treated for several issues with both her heart and lungs.
Her mum, Carly, shares her experience living in our family accommodation, as spending every day in hospital became the new normal for her.
“At first, I was in denial about how bad it was. Being so premature, Mila had already beaten a lot of odds against her, so in full mum mode, I just thought everyone was underestimating how strong she was. It wasn’t until we were admitted into Bristol Children’s Hospital, did we realise the severity of it. It was terrifying, and we really thought we were going to lose her.
The longer we stayed in the Paediatric Intensive Care Unit (PICU), having tough conversations with doctors, made me realise this wasn’t something to be dismissed. At one point, she went into cardiac arrest and had to have a breathing tube inserted. That was the scariest day of my life.
Carly, Mila’s mum“Music therapy in PICU was just a dose of happiness for us. It helped remind me that my Mila was still here and wanting to play.”
PICU is very intense – Mila’s music sessions brought a little normality to life. They reminded me of taking her to local classes at home. Mila really enjoyed the music and was always a lot happier once Claire, the music therapist, had visited.
Claire also recorded a lullaby for Mila that I still use now!
Karen, the music therapist on Caterpillar Ward, was lovely too. She interacted with Mila really well and was able to get her more involved in the instruments as Mila was more active. It was great that Karen used a clear visor so Mila could see her full face – that seemed to help her engage more.
Carly, Mila’s mum“The music sessions were the highlight of our week, on both PICU and Caterpillar Ward. It was just lovely seeing Mila having fun and smiling.”
Mila was treated amazingly at Bristol Children’s Hospital. Everyone that took care of her treated her like family and it was so reassuring and lovely to see her build relationships with people.
They were the same with me too – everyone was so supportive through our time in hospital, which on the most part was very difficult and scary.
Mila had play therapy with Karl in PICU, and with Aimee in Caterpillar Ward. We took her into the sensory room a couple of times which she loved, especially the bubble tube!
The accommodation in Paul’s House was brilliant, I stayed there for the full 22 weeks.
Only being across the road from Mila was such a big reassurance for knowing I could be there in a matter of minutes should anything happen.
Carly, Mila’s mum“Being in such a highly emotional situation, I’m very grateful for having somewhere to go at the end of the day to take some time for myself and get some rest.”
Recently, Mila came home. It’s been a little surreal after being in hospital for so long, but it’s just so wonderful we’re home again. There’s a lot to adapt to given her ongoing needs but she’s loving it, she’s trying her best to crawl and is a lot more vocal!
Mila’s name means ‘miracle’ in Spanish, which is why we chose it when she was born so premature – and she’s really lived up to it! But I think that’s more down to her nature: she’s determined and a fighter, but also the happiest little girl and no matter what she’s going through, she always has a smile on her face and wave for everyone.”
Karen and Claire, our dedicated music therapists, visit children and babies in St Michael’s Neonatal Intensive Care Unit and every ward in Bristol Children’s Hospital. Their work helps distract and entertain children going through incredibly difficult time, and helps both patients and parents work through the various emotions being in hospital can bring.
This wonderful service continues to bring joy to thousands of children every year thanks to the generosity of supporters like you, and grant-giving businesses like The Openwork Foundation, who put the wellbeing of children at the heart of what they do.
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