One minute Caitlin Lewis was capturing an unforgettable moment, as her husband introduced their four-year-old son to his baby brother for the first time.
Minutes later, on July 3, 2020, their world came crashing down when doctors revealed he had an incurable heart condition, which meant their eldest boy had only months to live.
Just five when he passed away on December 20, little Aiden’s memory is shining bright as carer Caitlin, 26, and her husband Joshua, 27, who works for a telecommunications company, scour the night sky for a star named in his honour, which will become visible in the next few days.
The couple, of Gosport, Hampshire, will also show their baby son Logan, nine months, the quirky video message made for his big brother by British astronaut Tim Peake, who shows off a tinned bacon sarnie like the one he ate in orbit, before saying: “Sending you big space hugs, Aiden.”
Reliving the moment last year when her joy turned to heartbreak within minutes of her two sons meeting, Caitlin said: “I don’t know how we coped.
“Within the space of a few days we brought one child into the world and then were told we were likely to lose our other son. It was an absolute whirlwind.”
Poorly since he was tiny, at six months old, doctors described Aiden as showing a ‘failure to thrive,’ which, according to the NHS, recognises that a baby’s faltering growth is a cause for concern.
Determined to spare other families the same heartache, Caitlin is now campaigning for it to become a legal requirement for children showing a failure to thrive at six months, like her son, to have all their major organs checked. She has the backing of her MP, Caroline Dinenage, and the Children’s Heart Federation charity.
“In Aiden’s case it would not have made a difference, but for other children it could show underlying health problems that can be caught early and treated,” she said.
The devoted mum was booked in to Queen Alexandra Hospital in Cosham, Hampshire, for her second child to be delivered by planned caesarean on June 30, 2020, only for Aiden to be hospitalised the day before.
She said: “At first I was given the option of delaying the birth, but the nurses said my blood pressure was through the roof so Logan had to come out.”
Poorly since he was small, plans for Aiden’s water birth were even abandoned as his heart rate dropped with each contraction.
Caitlin said: “We almost lost him. When they placed him on my chest, he was this weird grey colour and wasn’t breathing properly but, thankfully, he bounced back really quickly.
“We took him home and, after a couple of weeks, we noticed he was drinking a lot more milk than he should be. We thought he was just a hungry baby, but he wasn’t putting on any weight.”
Doctors initially thought he had a milk intolerance but, aged six months, they described him as having a ‘failure to thrive.’
And, after he was hospitalised with pneumonia aged two in March 2018, Caitlin sensed ‘in her gut’ his health was not right.
But it was not until the first lockdown in June last year that the full horror of what was happening to Aiden, then four, came to light.
Caitlin said: “He wasn’t interested in his favourite food and was sleeping all the time. I thought the pandemic was getting to him.”
Increasingly fatigued, she took him to the A&E walk-in centre at the Queen Alexandra, where a nurse spotted his flaring nostrils – often a sign of lung problems – and he was rushed to the children’s assessment unit.
Caitlin continued: “The doctors said they could feel his liver was enlarged. My first thought was cancer. I asked if I could call Josh and ask him to come.
“The fact they agreed during the pandemic made me realise how serious it was.”
An x-ray showed Aiden had pneumonia on both lungs and an echocardiogram – a scan used to look at the heart and nearby blood vessels – revealed heart failure.
Caitlin said: “I was so confused – a moment before it was his liver. Doctors explained that the pressure on his heart had caused it to swell, squashing his stomach, accounting for his loss of appetite and making his liver enlarged, too.
“Josh was there for the echo results and I saw the shock on his face when we were told it was his heart.”
Doctors suspected either pulmonary vein stenosis – where the major veins connecting the heart to the lungs either shrink or become detached entirely – or the less serious pulmonary valve stenosis, which is easier to operate on.
Caitlin was still digesting this terrible news as she prepared to deliver baby Logan.
She said: “I had to go home and prepare for the birth. Saying goodbye to Aiden was so hard.”
She continued: “He was a very intelligent little boy who knew all the planets in the solar system, so I just tried to distract him. I didn’t want him to be scared.
“He seemed quite well, because he knew hospitals were where people got looked after.”
Joshua, who stayed with Aiden in hospital the night before Logan’s birth, was given 20 minutes with his wife after the C-section.
“Josh knows how to calm me down. He reminded me that Aiden was in the best place for him,” she said.
Logan was born a happy, healthy 7lb baby on June 30.
Caitlin said: “When I held him for the first time, Aiden was still in the back of my mind – but I had a few precious moments to just focus on him and how light he was on my chest.”
Meanwhile, Aiden was moved to Southampton General Hospital, which specialises in heart conditions.
And, after a few days, on July 3, the two brothers met for a fleeting moment – because of lockdown restrictions – on Aiden’s hospital bed, where Logan lay on his lap and the boys cuddled together.
Caitlin said: “Before he was moved to Southampton, Aiden asked me, ‘Where is Logan?’ He was desperate to meet him, so when he finally did, he was so happy.”
She added: “He already seemed more like himself, because the doctors were draining his excess fluids away. He was singing and dancing, teaching Logan about PJ Masks, his favourite cartoon.
“He was an absolute natural at being a big brother.”
But, sadly, moments later doctors broke the devastating news that Aiden had pulmonary vein stenosis. While they could not say how long he might have left, Aiden was already much older than most children live to who have the condition.
Caitlin said: “I’m pretty certain they already knew, but held off telling us until after I’d had Logan and the two of them had met.
“They said there were four veins connecting the heart and the lungs and that in Aiden’s case the upper-left vein was completely detached and the other three were narrowing.
“When they told us, Joshua froze on the spot, while I had every single reaction in one go. I screamed, shouted, jumped away from the doctors – I even threw up.”
The bottom-left vein was 2mm wide when it should be 6mm, but doctors told the couple they could insert a stent through a vein in his groin to open it up.
Warning that it was very risky due to several complications, including that he was just 95cm tall and weighed 12kg – which the NHS classes as very small for his age – doctors said they would have to drill through his already weakened heart.
Still, the three hour procedure on July 7 went so well that Aiden did not need intensive care treatment and it bought them some precious family time.
With the first lockdown lifting, they enjoyed outings to nearby farms and zoos such as Drusillas Park in East Sussex.
Caitlin said: “Aiden had to take medicine every day, but Logan was such a good distraction for him.
“He was at high risk of getting Covid, so we had to find a balance to let him enjoy the rest of his life while keeping him safe. I didn’t want to look back and regret us not having done something together.”
On October 17, days before his fifth birthday on October 22, Caitlin and Joshua took Aiden to the Winchester Science Centre & Planetarium’s space exhibition.
But sadly, soon after his fatigue returned.
In November, he was given a feeding tube through his nose to boost his nutrition and doctors told his parents his liver had swollen again.
Caitlin said: “It was a shock when the doctors did another echo and told us his heart was in a worse state than it had been in June, because his last few scans had showed it getting a little bit better each time.”
He needed his existing stent replacing and another fitting to the vein on the right side of his heart.
While the first procedure went ahead on November 26, fitting a new stent proved impossible.
This time, Aiden was put on a ventilator in intensive care and doctors warned his parents he may never come off it.
Caitlin recalled: “It was terrifying seeing him struggle to breathe when they took him off the ventilator. He was so strong he had to be held down because he was throwing himself off the bed.
“Josh and I were clinging to each other, watching his stats go down and expecting to see them flatline at any second.”
But he pulled through and, on December 10, he left Southampton General in an ambulance decorated like Santa’s sleigh, complete with a paramedic dressed as an elf, ready to take him to Naomi House children’s hospice near Winchester, Hampshire.
Caitlin recalled: “He loved Christmas and we told him he had been so good that Santa had given him a special holiday.
“There was nothing more the hospital could do.”
She added: “Going to Naomi House allowed us to be a family at the worst time. Aiden was struggling to adjust to his new breathing machines so they helped us cope with that.”
Thanks to Naomi House, Aiden even received a special visit from Father Christmas in a helicopter, who gave him lots of toys.
Caitlin said: “It meant the world to him. People really came together to give him the best last few days.”
On December 15, the family went home and celebrated Christmas the day after, surrounded by loved ones, who showered Aiden and Logan with gifts and love.
Make-a-Wish UK even organised for Tim Peake to make Aiden a special video message, as well as getting him an Oculus virtual reality headset that made it look like he was in space and a star named in his honour in the Hercules constellation.
Caitlin said: “He loved all of it.”
She added: “The last time I gave him a bath we pretended he was washing his hair as if he was an astronaut, after Tim told him a ‘space secret’ about the ‘no rinse’ shampoo they use.”
On December 17, the family let Aiden stop wearing the oxygen mask which was keeping him alive, but making his face very sore.
“It was a fight to get it on him that night. He told me, ‘Mummy, I don’t want to wear the mask any more,” said Caitlin.
She continued: “If I’m honest, I wouldn’t have made that decision – so it was good it was him making it. The community nurses pulled us to one side and said it was more humane to let him take it off.”
Caitlin’s sister, who trained as a nurse, came round that night to help and expected him to pass away, but, as usual, he defied the odds.
Caitlin said: “The next morning, he just sat up and said, ‘Can I have a Haribo?’ and my sister was really taken aback.”
She added: “That day was beautiful. We played with all his Christmas toys and he played with Logan. That was his gift to us – seeing him being back to his old self one more time.”
For the next two days Aiden drifted in and out of consciousness, as his parents read to him, cuddled him and he used his Oculus to be transported to another galaxy, far away.
Caitlin recalled him slipping away on the evening of December 20, saying: “At about 9pm me and Josh checked in on him and we turned to each other and realised we weren’t going back downstairs.”
She continued: “We have two cats and they hadn’t left Aiden’s side for the entire day. I lay down next to him and Josh read some stories.
“There were just the three of us, while Logan was asleep in his cot.
“We called the nurses, because he was slipping away. He was in my arms and when they arrived they helped me to put him to bed and left the room, while we had our moment.”
She went on to say: “I had my hand on his chest, feeling his last heartbeats, while telling him how much we loved him and singing, ‘You Are My Sunshine,’ because he loved that song.”
Losing Aiden, who was buried on January 15, has left a huge hole in the family’s lives.
Caitlin said: “Whenever doctors said, ‘He won’t come out of hospital again,’ he proved them wrong.”
She continued: “He was just such an intelligent, caring little boy. Everything about him fills me with pride.
“Logan is too young to understand everything, but he looks at Aiden’s photo, smiles and reaches out for it. They had such a strong bond.”
This month the family will remember Aiden with a visit to Portsdown Hill – a scenic viewing spot near their home – to look at his special star.
Caitlin said: “We will always love him and carry him with us throughout our lives.
“Hopefully, his star, like his memory, will shine for eternity.”