Emma shares her family's experience caring for a seriously ill child, and the support she received from Rainbow Trust Family Support Worker Cindy.
"Please allow me to share with you what it is like to care for a seriously ill child, the emotional toll it takes on parents like me and how gifts in Wills enable Rainbow Trust Family Support Workers to help families when they are struggling alone.
When Oscar was born, he was admitted to the Neonatal Intensive Care Unit (NICU) due to a hole in his lung. Jack, Oscar’s dad, and I were told that Oscar would be fine, that it would heal, and that we could go home. However, Oscar continued wheezing and, after the GP saw him several times, he was referred to Southampton Hospital. I was not expecting what was to come.
The doctors did an x-ray on his lungs and told us that his lungs were okay but that he needed to be seen by the heart team. They diagnosed him with a serious heart condition that makes it hard for blood to pass through the arteries and he required open heart surgery. The surgery went well but Oscar had become increasingly weak and when they tried to take him off the ventilator he crashed. We ended up staying in the Paediatric Intensive Care Unit (PICU) for five weeks and then we moved to the heart ward.
I was terrified and I didn’t want to leave Oscar’s side. I didn’t want to miss anything. It was really hard being in the PICU for that long. We were very worried about Oscar and lived in fear. Four children died while we were in there, literally in the beds next to us. I just really feel for those families. That really affected me. It was so desperately sad.
I knew I was struggling, and things were slipping away. I was frequently in tears, struggled to talk about what was happening, and was not being myself with Jack. The ward put me in touch with Rainbow Trust. When they rang I was in floods of tears and, in May 2023, Family Support Worker Cindy began to support us.
With a frog in my throat I share with you that I don’t know where I would be without Cindy’s emotional support. Cindy described her support for me as having the friend I didn’t know I needed. I felt so much better from talking to Cindy and listening to her ideas. Even simple things, like helping me look at photos of Oscar taken while he was in hospital. I couldn’t do this previously, but Cindy helped me to reflect differently on this time. Those were also times of love, despite being a very challenging period for all of us.
Cindy helped me reflect on everything that was worrying me, and this has been so positive and useful. I was just not being myself and that was really hard. I am not sure if Jack and I would still be together if it wasn’t for Cindy’s support.
I know I am a better mum for seeing Cindy. I wanted to be able to empower Oscar to be proud of everything, but I was so emotional that it meant I wasn’t going to be able to guide him that way. I want him to be proud and not fearful of the world, or feeling like he should not talk about it because it will upset me.
Cindy helped me to get through this incredibly difficult time – we are having so much fun with Oscar now, rather than worrying and avoiding things. Rainbow Trust has helped us get through this extremely tough time together, but they need your help to be able to continue supporting more families like mine.
Thank you for the part you played in helping my family, for your wonderful support and for taking the time to read my letter.
Yours sincerely,
Emma
Oscar’s mum"
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