The Ups and Downs of Living with Half a Heart

As part of our Handmade Hearts series, LHM’s young members talk about life with half a heart. To learn more about Handmade Hearts, click here. 

Carys (18, DILV) describes the ups and downs of growing up with half a heart, her aspirations for the future and how LHM has helped her on her journey.

"I was born in 1996 with Double Inlet Left Ventricle, Hypoplastic right ventricle, hypoplastic aortic arch and Transposition of the Great Arteries. At four days old I had my first of four open heart surgical procedures at the Birmingham Children’s Hospital, where I received care until I was 16. This was when Surgeon Mr Bill Braun crafted my ‘handmade’ heart. 

My first three operations were as planned – my Fontan circulation was completed in 2001 and I was lucky that all of my first three ops went well and I recovered pretty quickly.  However, at age eight I went into hospital for a cardiac catheter for a partial fenestration closure, only for Dr Wright to find a large blood clot in my pulmonary artery.  A two night stay turned into over two weeks and full-blown open heart surgery.  I wasn’t impressed – although skating up and down the ward on my drip stand a few days post-op nearly made up for it. Looking back I was so lucky that the catheter happened when it did – if that clot had broken up it could all have been very different!"

Click here to read it in full.