On the 22nd of July 2008 Ashleigh Christina Hughes passed away. I just recently came across your website that had Ashleigh’s story on it.
Ashleigh had the Glenn’s procedure done. All seemed successful but then the surgeons and nurses realised after the 9 hour operation that Ashleigh had a bleed coming from somewhere, so she was taken back into theatre for further exploration to find the bleed. Later she was brought back into intensive care and we were told that Ashleigh’s operation had been successful.
Later on Ashleigh didn’t seem to be getting better and was declining. It was then that we were told she had reacted to the bypass and that in some cases it it takes people with Epstein’s Anomaly longer to recover.
We were informed a week later that Ashleigh might not make it, and she didn’t stand a very good chance of coming back from the way she was. She was in intensive care for 1 month and then by some miracle Ashleigh began to pick up – slowly but surely little by little, she began to get better.
Ashleigh lost the feeling in her feet and legs and also lost her voice from being in intensive care for such a length of time, with her breathing tube in. She began to recover and get physiotherapy for her legs. She was then taken to HDU and very swiftly to the ward.
She was known as the miracle. After evaluation she asked to go home and after much debate she finally came home. She seemed fantastic after a couple of hard, difficult months. She then turned 20 years old on the 7th of July 2008 and all seemed great – she was getting back to her good old self.
Approximately around the 20th July she began to feel ill and shaky and had tingling sensation in her hands. She was taken into hospital to be monitored and then her cardiologist asked her to be moved on the 22nd to Glasgow so that he could watch over her care and keep a close eye on her.
She just seemed tired from the trip and then she deteriorated and went into cardiac arrest. They tried to revive her but she didn’t make it.
I just want Ashleigh’s brave fight to be known to everyone, and as she had her story on your website I thought her sad but brave miracle should be known.
Natasha Hughes – Ashleigh’s little sister
Ashleigh originally contacted CRY in 2007 as she wished to share her experiences of SVT:
“Hi. I thought I would find the time to tell you my story and give you some updates on my condition! I’m such a busy girl!
Well where do I start? When I was 11 the doctor heard “a funny noise” in my heart. They thought it was a murmur so sent me for an ECHO of my heart, where they discovered I had a hole in my heart in between the 2 valves, and had to have it repaired.
Everything was fine for a couple of years – regular check-ups and medication until my heart had fully repaired. Then, playing hockey for my school became harder and harder. I thought I was just unfit and so did my coach, but it was only on the off chance of mentioning it to my doctor that he investigated it!
After a year or so, the doctors at Glasgow Yorkhill Children’s Hospital diagnosed me with SVT – Supraventricular Tachycardia – and Epstein’s Anomaly. In the past 2 years, I have had 4 radio frequency ablations which have unfortunately been unsuccessful!
Despite all of this I am at Edinburgh University doing Primary Teaching, and am fast approaching my second year. Living with this is hard and sometimes very stressful and upsetting, but at the end of the day you just have to live with something until you can get it sorted!
I would like to say that I am living a normal student life but unfortunately I don’t. I can’t drink and dance due to my heart condition and SVT – and the tablets I’m on make me worse! At the moment I am in talks with my doctor about getting a Glenn’s procedure done to correct my Epstein’s and which will hopefully sort out my SVT! We will wait and see I suppose!
I just wanted to write this because there are other people living with this, and even though I’m one of those unlucky people with Epstein’s Anomaly (which affects less than 1% of patients with congenital heart problems) heart conditions don’t have to ruin your life!
I just think of myself as being special that’s all – although some people think that’s because of my small brain size! But what I lack in brain I make up with it with my huge heart!
SMILE 🙂 xxxxx “