3-1-13: F/U Article on 13yo HVAD Recip. Kyah DeSimone (DailyMail.uk)
3-1-13: ”The teenager who carries her heart [HVAD] in her purse: Boston girl, 13, carries battery for 'artificial heart' in handbag and charges it through a car cigarette lighter” • Kyah DeSimone, 13, of Hyannis, Mass., suffered rare heart failure at the age of 10 and has since been waiting for a donor organ • In the meantime the junior high student has a titanium pump (Heartware’s HVAD”) making her heart beat and keeping her alive • She carries a purse with a battery to power the artificial heart which is wired through her abdomen • She can even charge it through a car cigarette lighter while she's on the move By Katie Davies, DailyMail.UK http://www.dailymail.co.uk/news/article-2286836/Kyah-DeSimone-Boston-girl-13-carries-battery-artificial-heart-handbag.html
In most respects she's a normal teenager with a love of hanging out with friends and talking fashion, but 13-year-old Kyah DeSimone from Boston carries a purse with her that matters more than the recent trends - it powers her artificial heart [Heartware’s HVAD]. The teenager was rushed to hospital from a sleepover when she was just 10 years old. Doctors were shocked to realize she was suffering from heart failure as a result of dilated cardiomyopathy, a condition which slowly means the heart is too weak to pump.
She has since been forced to make the agonizing wait for a heart transplant and, in the meantime, carries a purse with her at all times which includes a battery powering a chest pump or 'artificial heart' which keeps her alive. Doctors had to fight to win the energetic teen the titanium pump, which has been surgically implanted into her chest, and is powered by a small portable battery.
The small metal device wasn't yet approved for children but doctors asked for an emergency exemption saying they had no choice. Her frantic mother, Denise, a nurse, had little option but to watch and wait. 'I knew it was heart failure when I saw it,' she told ABC News. 'We didn't know if she would make it through the night," she said. 'It was the worst thing to watch, ever.'
Dr. Christina VanderPluym, a pediatric cardiologist at Boston Children's Hospital, treated DeSimone and argued for the (HVAD) pump. 'In the past, we would just allow these kids to pass peacefully,' she said. 'But now we have ventricular assist devices small enough to put in children, and that's what we were able to use in Kyah.' We had to ask for an emergency exemption. It took a lot of work by lot of different people to make this happen.'
Within an hour the device turned the Massachusetts teen's chance of surviving around. With the pump, her heart can pump 5 litres compared to one. She was kept in hospital for 2 months before being allowed to leave with her little black bag. It contains a battery pack and iPod sized monitor and connects to the pump through a wire in her abdomen.
PIC: ”How it works: This graphic by the FDA shows how Kyah's pump works. It fixes to her aorta and left ventricle and is powered via a wire through her abdomen. She carries her battery in a purse.”
'This battery pack is her life support,' Dr VanderPluym added. When's she in their Hyannis home she can plug the pump in to the wall and she has four back-up batteries in case it runs out. In the car she can even use use an adapter to get power from the cigarette lighter. 'I can feel it inside, vibrating,' she said. 'It's very noisy. It's a little nerve-racking.' She says she remains positive about the possibilities of getting a transplant and in the meantime has plans to decorate the bag so it fits in with her fashion-hungry teenage life.
The pump - known as a Heartware Ventricular System (HVAD) - was approved for use in children by the FDA just 9 days after Kyah's implant was approved.
PIC: ”Emergency: Kyah DeSimone was rushed to hospital from a sleepover after suffering heart failure. The teen pictured with her mum, right, and doctor, left, now has an (HVAD) artificial heart.”
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