Cassie Symms tells us about her son Zander’s battle to live to see his first birthday…
‘I saw in the doctor’s face it was bad. My whole world crumbled’
Mum & Dad: Cassie and Dan
CHD CV: Partial AVSD
“Zander was only nine hours old when they discovered he had “something” wrong with his heart, back on July 31, 2010. Despite the murmur, he was feeding well, was a good colour and was a very good weight at just under 10lb 3oz.
My husband Dan and I were allowed to take him home to be with his big sister Avril, with the promise of an appointment in the next two weeks to check his heart. We were just told that if he went grey or floppy to ring the hospital straight away. It was hard to take in and, if I’m honest, we really thought they had got it wrong for two weeks. Zander fed brilliantly, slept lots and had no breathing problems.
But then we went for his heart scan at Rotherham Hospital. I could see from the doctor’s face that it was bad news. He said Zander had a very serious heart condition that he suspected was Tetralogy of Fallot. My world was crumbling. How come my son looked healthy and was doing so well? He was pink, happy and content. We went to Leeds the next day, where the consultant confirmed Zander had TOF, a large VSD and severe branch pulmonary stenosis, and told us that if he behaved he wouldn’t need surgery until he was around a year old. It still didn’t seem real. How could my tiny baby need open heart surgery? Why him? I put everything into finding out as much as possible about his condition – and I’ve met some amazing friends along the way, especially on the CHSF Facebook page.
At about six months old, Zander started to show the signs of being poorly. He had eating and breathing problems, blue spells and was put on beta blockers. The blue spells were horrible and scary. They did Zander’s first open heart surgery on June 10 last year, just under two months before his first birthday.
He was in theatre for almost 13 hours – we were told the average is eight. He had post-surgery complications – high blood pressure and temperatures; he was on and off dialysis and suffered complete heart block. Zander’s surgeon, Kevin Watterson, is an amazing, dedicated man who was by my son’s side day and night for those first seven days. He is a hero and his team are amazing too.
After a week, Mr Watterson decided to do a second operation, so Zander went to theatre again – this time to have a pacemaker fitter, which took just over two hours. My little baby was still only ten months old. The nurses on Ward 4 (the intensive care ward) were my rock. They were there when I broke down after hearing that Zander would have to have a second surgery before he even woke up from his first. I was very scared and the nurses really helped me along. The care Charlotte gave Zander straight after surgery was amazing and she was like his fairy godmother.
It’s nearly a year on from then, and Zander has had many out-patient appointments since his surgery. He sees his cardiologist every two months and has had complications since coming home. His inlet valve is leaking and the right side of his heart is enlarged. His medication has been upped because he has become more breathless and tired. He’ll need more surgeries in the future – but we don’t know when.
We try to stay positive. We believe Zander is here for a reason. He has proved he is strong because he’s made it this far and has fought harder than we could have imagined. Zander is an inspiration to us. He’s a miracle and he is tough beyond words. He started walking in January and has just started running. Although he gets tired very easily and wants to sleep lots, he amazes me every day. He loves playing with Avril, who is a brilliant big sister and has been very brave and strong. We live every day the best we can because we never know what is around the corner. We know we are blessed to have Zander here with us.”