Jen is heart-mum to Sophie who is 11 and has Hypoplastic Left Heart Syndrome. Jen talks about her experiences of lockdown as a heart-family and how their normal is different.

“The beginning of lockdown was a worrying time, because nobody knew whether COVID presented a significant risk to children.  Although we did limit Sophie’s contact outside of school, we thought it was important that she continued to attend school, at least until more detailed guidance was available.  However, in the middle of March we received guidance from the British Cardiac Association that children with single-ventricle heart conditions should be taken out of school.  This was obviously daunting, but it was good to have some clarification on what we needed to do.” 

Mum, dad and Sophie’s two brothers had to continue life as normally as possible around this – with Jen as a key worker in school, extra precautions were taken when she came home – she would change and wash her clothes immediately and have a shower before she went anywhere near Sophie.  Initially it was scary going outside with Sophie and they really didn’t let anyone come near her.  

The biggest challenge we faced was whether to send Sophie back to school in September and the consequences this would bring either way.  They decided to send Sophie back to school and she needed to be able to be in contact with people to help her immune system continue to fight all the other nasty things she flights on a daily basis.  If we didn’t do this, she could return to school facing things which her body hadn’t been in contact with which she normally would have. Throughout the winter term there were lots of ups and downs, mainly because Sophie had to isolate due to positive cases in her class.  But overall this time has given Sophie the opportunity to slow down and recharge.

I think for us, we are taking things really slowly, we have tried really hard to keep things as normal for Sophie as we can but keeping the risk as low risk as we can too. We are excited to get things on the way to being normal especially as Sophie is due to start secondary school this Sept.  We are so proud of her and want to celebrate all the things she has achieved in primary school.  We want her to be able to do all the normal things a year 6 does, but we know that this all might not be achievable.