Zuzanna, who is aged three, visits us at Bluebell Wood for short breaks and day care. She has an undiagnosed condition which affects her muscle strength and breathing. Her mum and dad, Agata and Lukas, tell her story.
Agata said, “When Zuzanna was born on Boxing Day 2013, it was clear that she was very poorly. She didn’t cry, breathe or move and was very grey. She was put in an incubator and given oxygen, but it was so hard for me and her dad, as it was such a shock after having a healthy pregnancy. Zuzanna would just sleep, she had an oxygen mask on and had to be fed through a tube. She hardly ever opened her eyes.”
Lukas added, “Zuzanna spent three months in Doncaster hospital before coming home. We had four weeks at home with her before she became really poorly again. She went back to hospital and was rushed straight to the High Dependency Unit; where they told us that one of her lungs had collapsed. Zuzanna had lots more tests but the doctors couldn’t find out why she was so weak.
“She was transferred to Sheffield Children’s Hospital and had many more scans, MRIs and biopsies. She was in and out of intensive care, and had to have help breathing and feeding, as she couldn’t breathe on her own.
”After more tests, we were told the devastating news that she had a tumour on her kidney, a hole in her heart and she might have a muscle condition called congenital centronuclear myopathy. This meant that she was unlikely to live longer than 18 months, as her muscles would get weaker and weaker as she got bigger.
“We decided there and then to do everything we could to make it better for her, even if it only extended her life for half an hour. She had an operation to have a tracheostomy to help her breathe without the oxygen mask, and a peg to feed her through her stomach. That made her so much happier – she started to play more. Without her oxygen mask, we could see her beautiful smile, and we knew she was so happy to live. All the time
though, we were just waiting for 18 months, we had planned her funeral, and were living only in the present and not thinking about the future.
“We finally left hospital in September; nine months after she was born. That’s when we came to Bluebell Wood. We had been in hospital so long, it was really scary to think about coming home- we needed the mental help to learn how to manage Zuzanna’s condition by ourselves, without being able to call for a nurse. At Bluebell Wood, it was brilliant. We were able to stay in one room all together. They gave us the confidence to know we could care for Zuzanna, but we still had someone to call if we needed advice or support.”
Agata added, “After we came home, Bluebell Wood community nurse, Kate, came to help us at home. Now, we go to day care at the hospice. She loves the messy play room, soft play and the music room and plays so happily there. Day care means I can relax, and just read a book or go for a walk. It’s wonderful to just feel free for a while, and not have all the bad thoughts going through your head. It’s great for Zuzanna too, as before she’d just had hospital and home in her life – now she is a very social child, is used to spending some time away from us, and isn’t afraid of the world.
“The Care Team are there for us as parents too. We can’t always explain what we’re going through to family and friends, and they can’t understand what we’re going through; sometimes other people seem afraid to talk to us. At Bluebell Wood there are other children, and other parents, who are facing the same things as us, and the Care Team always know what to say.”
Lukas said “It’s like a holiday, going to Bluebell Wood. We can’t stay in a hotel with Zuzanna, and she can’t travel on a plane because of her medical needs, so Bluebell Wood is our holiday time. The hospice has improved the quality of life for Zuzanna and other children like her, spending time there makes her so much happier, and is a big help for us as parents. Please consider donating – just £1 in a collection tin means you’re giving so much happiness to children – what better way to spend £1?”