My Normal is Different – living with a single ventricle heart condition.

Suzie Hutchinson, CEO of Little Hearts Matter

The pandemic has thrown the world into crisis.  But what if you’ve always lived with fear, isolation and uncertainty?  As society gradually begins to resemble normal life our families will continue to experience the day to day fear and isolation that comes with a life threatening and incurable heart condition.   Their normal will always be different.

Children and young adults with half a functioning heart  have less energy than their friends, often need added support in school and need to make compromises for every single decision in life from;  planning to get around, booking a holiday to forming relationships and deciding to start a family.

All these issues and fears have been magnified with the arrival of the pandemic.  We have seen our young members shut away to keep them safe, fearful that the increased risk of COVID could end their lives. We have seen support disappear within health, school and employment arenas. Concerns about the mental health of our young member’s has increased, compounded by the added fear that their lives are at an even greater risk and a lack of available support for their families.

As the only national charity working specifically with children, teenagers and adults born with only half a working heart, we’re here for every step of their half a heart journey. We support, care and advocate for anyone seeking our help. This approach sits at the very heart of our work.

The COVID-19 crisis has asked such a lot of our members and we have been the natural place to seek support. There have been times when medical teams have not known the answers about the virus risk or protection needed for their patients. The LHM team have linked with the profession to help create the answers that our members, and the CHD population, have needed to keep informed and safe

Charities were identified as having a vital role in providing support and information to patients and families during the first wave of COVID-19 and at times were the only perceived source of information and support.” (The impact of the first wave of COVID-19 on those with lifelong conditions: a case study of congenital heart disease) Jo Wray1,2, Christina Pagel3, Adrian H. Chester4, Fiona Kennedy5 and Sonya Crowe3. 

This impact of our vital services is expressed through the voices of the families we support.

“LHM has been a lifeline during Covid-19 and lockdown. There have been times when it feels like some of us have been in and out of the LHM Facebook page 24/7 for days on end. They’ve really stepped up their game for this crisis, it feels like they’re always there and looking out for us. This has been a terrifying time for anyone with a heart child, but it could have been so much worse without LHM”. LHM Parent.

Thank you for an amazing Christmas party full of laughter and joy. Our favourite was the Christmas tree decorating, we were crying with laughter.  We have been in shielding since the end of February as we were in hospital when the first cases of Covid came in as George has been poorly and under investigation.  also found out last week George’s surgery isn’t working as it should so they want to do more operations.  It’s been a tough year of home schooling, reduced income due to my contract suspension and a poorly George so we haven’t been our happy selves. Tonight we are full of laughter and smiles so thank you so much. We really needed this.”

Perhaps in the last year we have all had a little taste of what compromise and fear for our lives means and can see more clearly what our young members, and their families, deal with every day. During our annual Awareness Week  this month we are highlighting ‘My Normal is Different’. COVID-19 may have made life worse for everyone but even when the world returns to normal our young members lives will always be different.

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