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Meet our families - Esmé

Here is our cheeky Esmé Esmé is 3, 4 this year & is one the cheekiest little girls you could meet. Esmé and her family have been supported by Emily’s Star for a couple of years & during this time they have attended many of our family events & Esme and mum also attend our Home School Group. Esmé has learnt to sign and she is doing a great job at teaching us too! Esmé loves to sing and she enjoys our music home school groups session the most! Her favourite thing to watch is Encanto… When Steph, Esme’s mum was pregnant, Esme was diagnosed with Coarctation of the Aorta (COA) and Unbalanced AVSD (Atrioventricular Septal Defect). In basic terms means that there are ‘holes’ between the two chambers of the heart and the valves that control the blood flow and oxygen are not formed. The reason for unbalanced is because her left chamber is not existent. She has had two open heart surgeries (Norwood and Glenn) another this year or next (Fonton- weight depending) Already by the age of 3, Esme has had several ICU stays, emergency procedures, several catheterisations. She also a hypoplastic arch and other heart defects. Due to her heart condition and several medical procedures she has vocal palsy, SALT, SEN, complex needs, dermatology, OT, physiology, sleep clinic, etc. Heart conditions can be so complex and varied. Esmé’s is literally so rare. Esmé will develop like an asthmatic-shortness of breath and breathing difficulties. Her body struggles to cope with everyday tasks and her mobility is weak because of this. She goes blue quick and her body struggles to cope at times. The simplest cold can turn into days in hospital on oxygen and antibiotics. Her mum Steph, would like people to understand the day to day and how many struggles heart children go through. Luckily, there are so many charities and support out there but when I left hospital with Esmé I knew hardly anything! #EmilysStar #AVSD #COA #Heart #ComplexNeeds #Rare #Unique #Loved



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