Lilly’s story told by her mother Kirsty

Lilly’s heart was stable when she was born so was born in September 2020 and she was discharged by the Friday of that same week.

Lilly has a very rare heart condition called dextrocardia where the heart is on the right hand side of the chest rather than the left. Lilly is doing well and will be having surgery soon to help her Tetralogy of Fallot, large VSD and a narrow pulmonary artery. Her heart is so unique the medical professionals have been unable to diagnose all her defects.

 

 

 

 

 

 

 

 

Lily had a good few months at home before she started showing lowering SAT levels however, she wasn’t able to have the heart repair she needed because her artery was in the way, so instead, at seven months old she had a BT shunt to allow her time to grow before the main surgery. She has had a few bumps along the road but is doing amazingly well and tries to carry on, even when breathless, we have no.idea how she does it.

Lilly is due her heart repair in the next few months as her SAT levels are lowering more recently. She had a diagnostic catheter procedure last month in preparation for the oncoming surgery.

Lilly is a very active wee girl, loves watching Encanto, Moana and her favourite Turning Red. She always smiles away and is a very content brave girl. She is sociable and loves playing with her cousin and seeing her friends and family.

We have a very long journey ahead with Lilly as she has other health conditions, however she takes it all in her stride and carries on like nothing bothers her.

Lilly is trying to walk now and although she is breathless she is so determined to move. Lilly may have a very unique heart but she also has a very happy and determined mind. She knows who is boss and tells her heart that she is in charge whatever she is going through.