MM Inspiration


When I went into the hospital on the Monday, however, everybody was gathered around the bed. Lucy had arrested, but, fortunately, she only needed two rescue breaths. She was then put on a 24-hour tape and it was discovered that she had a first- degree heart block


> kept her in for two and a half weeks – primarily to get some weight on her through a nasal gastric tube. ‘We had an added problem in that Lucy wasn’t able to tolerate


milk – she’d been breastfed – so I had to be trained to use the tube at home. This took four days. Unfortunately, Lucy still couldn’t tolerate milk and so we had to go back for another eleven days. ‘Eventually, we had to leave the hospital because Chloe was


going to Birmingham for her open-heart surgery. Since the girls had the same consultant, the two hospitals had been exchanging pics of Lucy's heart and the Birmingham consultant decided that he would look at Lucy since she was there at the same time. ‘In Birmingham, Chloe had her open-heart surgery and two days


later, Lucy had two holes in her heart repaired. Chloe was fine afterwards – the surgery went well, but Lucy had had the electrical signals in her heart damaged during the operation and so had to be given an external pacemaker. We didn’t know if this would be temporary or permanent. We were just told that if the signals had been cut through, she would need more surgery. ‘By the Saturday, Lucy’s heart had started to pace itself and so


she was taken off the external pacemaker. ‘When I went into the hospital on the Monday, however,


everybody was gathered around the bed. Lucy had arrested, but, fortunately, she only needed two rescue breaths. She was then


The girls today


Fitness fanatic Susan with the girls in tow!


put on a 24-hour tape and it was discovered that she had a first- degree heart block. Millions of people have this, apparently, and don’t realise as it doesn’t have any effect. ‘The consultant has now said that he will get the ball rolling in


November for completion of Chloe’s surgery. This is known as the Fontan. It means that her heart will be made into a univentricular pump, ie, that it will do the work of two ventricles in one. The Fontan is not a cure - it’s just palliative surgery - but it will keep Chloe as healthy as possible.’ Today, the girls are almost three years of age. While Lucy is now


100 per cent and shouldn’t have any issues unless the first block gets worse, Chloe is on permanent medication. She can run around just like her sister, but tires easily. ‘Chloe tries to do everything,’ Susan continues, ‘but we have to


keep an eye on her energy levels. As she gets older, though, she’ll be able to self regulate. She’ll also become more aware that she’s not capable of doing certain things. In the meantime, her condition just means that anywhere we go we have to take medication with us.’ You would think that, in the midst of all of this, Susan and her


husband ?? would be unable able to maintain any form of ‘normal’ life, but, it transpires, they manage pretty well. ‘When the girls turned one, I went back to teaching Pilates and


doing sports massage,’ says Susan. ‘I also managed to get respite care two mornings a week, which gives us a break. My husband and I don’t have time for each other, that’s for sure! Our focus is always on Chloe. ‘We’re just waiting now for November’s review in the Royal


and we expect to be back in Birmingham in the near future. In the meantime, we just have to live each day as it comes and enjoy our girls!’


Susan and her family were supported by, and continue to raise funds for, Children’s Heartbeat Trust. The charity has been working since 1984 to provide practical, emotional and financial support to children and young people living with heart disease and their families. For more information, visit childrensheartbeattrust.org


14 Modernmum


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