#mynormalisdifferent – supporting young people with a single ventricle heart condition.

Lexie Katsaitis – LHM Youth Support Leader

The last year has seen the world adapting to a new normal due to a worldwide pandemic. A life more isolated with restrictions on what we are able and unable to do. A normal where we try live our day to day lives even with the worry of a potentially debilitating illness in the back of our minds. A very different normal to most people.

The uncomfortable truth is that for young people with half a working heart your new normal was their day to day life before the world was affected by COVID-19. And during the pandemic their new normal was this magnified.

The Little Hearts Matter youth support service had tailored their support to work with, empower and support young people with single ventricle heart conditions before this pandemic. During it, we had to adapt this support to not only ensure that we were there for our youth members at a time we could not physically be there but to ensure that the support we provided lifted our youth members up and supported them when they struggled not only with life as a young person with half a heart, but as a young person with half a heart during a worldwide pandemic.

We have worked hard to ensure that our youth members not only felt like part of a community by offering virtual group parties, chat groups, games and Netflix parties but that they had a safe space to go to when the stress became too much or when they fell ill and needed support, like one of youth members Lucy.

Lucy is just 16, very bright and longing to live a normal life. She only has half a working heart and a complex lung condition. Through her life she has had problems accessing supportive education and she has had problems making friends because she has had to take a great deal of time out of school. When she was 14 she moved into a wonderful school that offered her lots of new opportunities to learn and a chance to make friends.

Then Covid struck. Lucy was told that she must shield, away from her new friends and many of her family. Trapped at home, trying to access her education and cope with the added fear of catching a virus that could kill her, understandably she felt very alone.

Lucy, already a member of Little Hearts Matter, looked to the charity for information and support. She started to message the youth leader and immediately gained the one to one support she was seeking. LHM could give her up to date information about Covid and how to keep safe and explain the information she was getting from her medical team.
She joined in with the youth group and met with other young people who have the same condition and the same fears. Able to share her worries with others allowed her to voice her concerns and gain confidence in her ability to cope. She and her family joined the Christmas party, took part in the live music events and enjoyed the company of other families living with the same risks and worries.

Unfortunately Lucy caught Covid. She was immediately hospitalised and on oxygen. Lucy was more alone and frightened than ever before. The LHM team reached out to help. Facetiming, texting and boosting her moral. The youth group played games with her, let her laugh, behind her oxygen mask, and generally made sure she did not feel alone.
Lucy is at home now, sadly she has some long term effects from Covid but she is still texting her LHM mentor, joining in with the youth group games and reaching out for one to one support when she needs it. The charity have been there for her but hand in hand with that we have been there for her family. We can reduce stress and fear better if we all work hand in hand.

This year the aim of LHM Awareness Week is to ensure that people know that as the pandemic begins to subside and the world’s normal returns, our youth members normal will remain different. As people begin to get excited about seeing and hugging their friends and family, so will our youth members but with that little voice in the back of their head reminding them to cautious. 

Be social with us - our latest tweets and posts