RAF Benevolent Fund Welfare Support Executive Kevin Hughes shares his daughter's story

With this week (26 September – 2 October) being Organ Donation Week RAF Benevolent Fund Welfare Support Executive Kevin Hughes reveals his daughter’s story in his own words. 

Esme Hughes, 8 was born with aortic stenosis, a narrowing of the aorta. Her mum Lisa is a member of the RAF, working as People Op’s and then based at RAF Odiham. 

Here Kevin takes up the story. 

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

At three weeks old we noticed that she was making a ‘head bobbing’ motion as she breathed so we called NHS 111 and they sent an ambulance. She was taken to the Lister Hospital, in Stevenage, Hertfordshire, 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. 

In August 2014 she was taken to the Royal Brompton Hospital as an emergency, and they carried out a catheter procedure to try and open the valve. They were successful in making the valve wider than a pinprick, but she then had to have another catheter procedure, in February 2015, to open the valve further. The valve partly worked and there was discussion that if the scarring in her heart recovered then they would replace the aortic valve. 

Unfortunately, in July 2016 a doctor 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 was so large, it collapsed the left lung and so her infection was difficult to clear. She was admitted to the Royal Brompton Hospital in July 2017 with para flu and needed to be ventilated as, again, her lung had been collapsed by her heart. We stayed there until Esme went to Great Ormond Street Hospital in August 2017, where her assessment continued and she was put on the urgent transplant list. 

Esme deteriorated rapidly and was put on extracorporeal membrane oxygenation (ECMO) whilst they tried to fix her aortic valve. We then received a call at 3am informing us to come to the hospital as they did not think Esme would make the night.

A doctor at Great Ormond Street used a melody valve to try and make her aortic valve stable, which was the first time this had been done, as it’s normally used in the pulmonary valve, this procedure has now been used on other children with great success. 

These operations involved 28 hours of surgery over two weeks. 
The Berlin Heart machine had high risks but was the only option to keep her alive until a new heart was donated. 

Esme had been ventilated for four months when they extubated her and at this point she then had to relearn how to walk. 

After almost a year on the Berlin heart machine in July 2018, Esme’s call came, and she got her new heart. Since transplant she has finally been able to go to school and try to live like any other child her age. 

The first thing Esme wanted to do was go to a beach, so we did, and she loved every minute of it. She loves to dance and presently is so well that she has taken up dance classes, which she does twice a week. 

Esme has done so well and she’s such a strong determined little girl, but she knows that none of this would have been possible if a family did not do the most selfless thing they could and donate their angel’s heart. 

Esme tries to give back by doing gestures like helping the homeless and she has just signed up to do a pretty muddy 5k to give back further. 

Her story also featured in national newspapers and on TV. 

Nobody wants to think of the worst happening to their child or loved one and I know how the organ donation talk goes – I lost my first daughter in 2002 and, as devastated as I was, I did not hesitate in agreeing to donation.  

As a ‘heart family’ we have seen the loss of too many beautiful angels whose call did not come in time. 

Please share your wishes, sign up on the Organ Donation Register and maybe your sadness could bring a touch of life to somebody who needs it.