“I wish to be an astronaut”
5 years old, Gosport
Five-year-old Aiden was such a strong little boy, it’s fitting that the star named after him is in the constellation Hercules – the hero of classical mythology who was renowned for his strength.
Born with a rare heart condition that wasn’t diagnosed until he was four, Aiden defied all expectations to live as long as he did. He had always struggled to gain weight, and this was initially put down to lactose intolerance. But later he was diagnosed with ‘failure to thrive’ which means that, for an unknown reason, he wasn’t growing at the rate expected for his age.
Now his family is campaigning to ensure that any child with this diagnosis has an echocardiogram by six months to check for heart conditions, so that further investigations can be carried out and treatment given if it’s possible.
Aiden’s mum Caitlin said: “Aiden was a confident, friendly and active boy who seemed to retreat into himself and get very sleepy. At first, we thought it was because of the pandemic. The turning point was when we went for a walk in the New Forest. He slept in the car all the way there, he took 10 steps and spent the rest of the time being carried on my brother’s shoulders and slept on the way home.”
Later, Caitlin thought Aiden might be anaemic. He fell asleep while she and her husband Joshua were trying to get him to eat his dinner. Then again in the bath. After dialling 111, the ambulance crew advised to take him to the doctors the next morning. Tests showed that he had an enlarged liver and pneumonia. At Queen Alexandra Hospital in Portsmouth, a chest x-ray showed a mass and Caitlin feared it was cancer. But Aiden was going into heart failure.
Caitlin, who was pregnant with their second child, was stunned and recalls: “It was one thing after another. Within two hours, we were in a private room. Then Aiden had his first echocardiogram. Josh joined us, and I had to tell him ‘it’s his heart.’ We had no idea at all.”
Meeting his baby brother
Aiden was diagnosed with severe pulmonary vein stenosis the day before his baby brother was born on 29th June 2020. Scans showed he had only three pulmonary veins instead of four and they were “wired up wrong” - they had grown out from his heart at odd angles. To compensate, the outer lining of his heart worked harder, causing it to enlarge. It’s a condition sometimes present in premature babies, but Caitlin’s pregnancy with Aiden had gone full term and, other than an overnight stay in an incubator, he had been well and was sent home.
When baby Logan was born, he couldn’t meet his big brother at first because of Covid. Dad Josh cuddled him for 20 minutes, but then he had to get back to looking after Aiden.
Finally, Caitlin and Logan were able to join Aiden, but this was only permitted because their situation was serious. Aiden’s parents were told there was no treatment for his heart condition. Even a heart and lung transplant would not have worked. Caitlin and Josh have one photo of the four of them together that day.
Aiden had a stent fitted and, while they knew the time he had left was limited, they wanted something positive to experience. That’s when his family was referred to Make-A-Wish by Aiden’s consultant.
Aiden's astronaut wish
Caitlin explained: “Aiden was a clever boy who loved learning and soaked up information like a sponge. He really got into learning about space when he started school. We visited Winchester Science Museum for his fifth birthday, and he loved watching the science experiments. So, his wish was to meet an astronaut.”
Wishgranter Tequilla and her team got their heads together to see what Make-A-Wish could still do for Aiden under coronavirus restrictions. She ordered him a virtual reality headset so he could take a walk in space through special goggles. She arranged for a star to be named after him, as one of his family’s favourite quotes is from the story of Peter Pan: “Second star to the right and straight on till morning.” Then Sir Tim Peake agreed to record a video message for Aiden which he loved!
Aiden was delighted to learn from a real astronaut how people had a drink while on a space walk and how they washed their hair using dry shampoo. Some space cupcakes and balloons completed the experience.
Caitlin said: “The Oculus was great, especially as Aiden’s energy levels were low. That night we washed his hair like an astronaut too. It brought us a lot of happiness to be able to distract him from what was going on.”
Aiden had a second stent fitted. He fought off sepsis, a collapsed lung and swollen airway. He defied all the odds by coming off his ventilator and being discharged from Ocean Ward into the care of Naomi House children’s hospice.
An Early Christmas
His family called his stay there an early Christmas holiday because he loves that time of year and they wanted to make it special, knowing that he probably wouldn’t see Christmas Day.
Caitlin said: “The paramedic who drove us there dressed up as an elf and said Santa had told him Aiden had been a good boy. There were no nurses, which was important for me, and we just played with his toys. It really felt like a win that he managed to get back home. We went home on 15th December and called it Christmas Eve, then had Christmas day at home on 16th.”
Aiden surprised everyone, including his auntie who is a nurse, by rallying round and even asked for some chewy sweets. But wearing his oxygen mask caused sores round his mouth and it became too uncomfortable to wear, so it was his decision to remove it on 17th.
“He had had enough, and it was excruciating but we decided to respect his wishes as the oxygen was only ever going to give us a bit longer. We didn't feel like it was in his best interests anymore as it was causing him so much stress and discomfort. We thought we were going to lose him that night, but we were blessed with a full day on the 18th of December. Aiden was back to his usual self and we played the entire day with him and his new toys. Over the next two days Aiden just got more tired by the hour but was comfortable and we were very grateful to the nurses who took care of the medical side of things so we could just cuddle the boys and read stories, tell jokes and play games.”
Aiden slipped away on 20th December. But Caitlin and her family are determined to keep his memory alive. Every morning, Caitlin wakes up baby Logan and takes him to Aiden’s bedroom to open the curtains and say hello.
She says: “Logan already reaches for his brother’s photo. He’s going to grow up knowing exactly who Aiden was.”
Caitlin said: “The reason I want to campaign for an Echo to be mandatory is because I can’t imagine being the parent of a child whose heart condition wasn’t found when there was something that could have been done to treat it. That wasn’t the case for us, so it was a good thing we didn’t know about it, because it meant Aiden got to experience a normal life. But for other people, there might be other options.”
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