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Esme Hughes – May 2018

Esme was born on the 30th July 2014 with no complications and a perfectly healthy little girl.

At 3 weeks old it we noticed that she was making a ‘head bobbing’ motion as she breathed so called 111 who sent an ambulance. Esme was taken to Lister hospital in Stevenage where they diagnosed that she had a heart murmur and gave her an echocardiogram to determine the cause. They discovered that she had severe aortic stenosis which meant her aortic valve had never fully developed and had only one flap instead of the normal three- this meant blood could not flow in and out but was just regurgitating.

On 22nd August 2014 she was blue lighted to the Royal Brompton Hospital and they carried out a catheter procedure to try and open the valve. They were successful in making the valve wider than a pin prick but she then had to have another catheter procedure on 15 February 2015 to open the valve further. The valve semi worked and there was discussion that if the scarring in her heart recovered then they would replace the aortic valve. Unfortunately in July 2016 Dr Rigby from the Royal Brompton Hospital informed us that Esme has Cardiomyopathy (dilated heart) and the only option would be a full heart transplant.

Esme had been very well in herself up until May 2017 when she contracted pneumonia and because her heart is so large it collapsed the left lung and so her infection was difficult to clear. Esme was admitted to the Royal Brompton Hospital on the 7 July 2017 with Para flu and needed to be ventilated as again her lung had been collapsed by her heart. Esme went to Great Ormond Street Hospital on the 18th August where she was given a transplant assessment and put on the transplant list. Esme then deteriorated and was put on ECMO (a machine which takes the blood out of her body and acts as her heart and lungs) and in September 2017 was put on a Berlin Heart. The Berlin Heart is a pump on the outside of her but is attached to her heart- it makes the blood bypass her left ventricle  and has so many risks but it is the only option to keep her alive until a new heart is donated. Esme is on bear ward on high dependency and will remain here until she gets her transplant.

Louise founder of Little Troopers said “Esme was nominated by her dad WO1 Hughes who serves in the British Army, her mummy also serves in the RAF, their story shows that military families can often not only be dealing with forces life but exceptional circumstances. Esme absolutely deserve to be recognised as a very brave and special Little Trooper and every one at Little Troopers sends so much love and strength for a transplant very soon”

Dad Kevin Hughes said of Esme “Esme is currently in Great Ormand Street hospital awaiting a heart transplant , she has been on a machine keeping her alive for 8 months been in hospital 12 months. She really is a true inspiration and a fighter”

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