For a minute, Caitlin Lewis captured an unforgettable moment when her husband first introduced their four-year-old son to his little brother.
Minutes later, on July 3, 2020, their world collapsed when doctors found out he had an incurable heart condition, which meant their oldest boy only had months to live.
Only five when he passed away on December 20, the memory of little Aiden shines brightly as 26-year-old caregiver Caitlin and her 27-year-old husband Joshua, who works for a telecommunications company, search the night sky for a star that named in his honor will become visible in the next few days.
The couple from Gosport, Hampshire, will show their young son Logan the bizarre video message that British astronaut Tim Peake made for his big brother, who shows a canned bacon sarnie as he ate it in orbit, for nine months did say, “I’m sending you big hugs, Aiden.”
Seeing the moment last year, Caitlin saw her joy turned to heartbreak within minutes of meeting her two sons and said, “I don’t know how we handled it.
“Within a few days we had a child and then we were told that we would likely lose our other son. It was an absolute whirlwind. “
Because he was young and six months old, doctors described Aiden as “unsuccessful,” which the NHS acknowledges that a baby’s staggering growth is a cause for concern.
Determined to spare other families the same grief, Caitlin is now committed to ensuring that children, like her son, who cannot thrive after six months, have all major organs examined. She is supported by her MP Caroline Dinenage and the Children’s Heart Federation charity.
“In Aiden’s case, it wouldn’t have made any difference, but for other children it could reveal underlying health problems that can be detected and treated early,” she said.
The devoted mother was admitted to Queen Alexandra Hospital in Cosham, Hampshire for her second child to have a scheduled caesarean delivery on June 30, 2020, only to allow Aiden to be hospitalized the day before.
She said, “At first I had the option to postpone the birth, but the nurses said my blood pressure was through the roof so Logan had to come out.”
In fact, since he was little, plans for Aiden’s water birth were abandoned as his heart rate dropped with each contraction.
Caitlin said, “We almost lost him. When they put it on my chest, it was that strange gray color and wasn’t breathing properly, but luckily it bounced back very quickly.
“We brought him home and after a couple of weeks we found that he was drinking a lot more milk than he should be. We thought he was just a hungry baby, but he didn’t gain weight. “
Doctors initially thought he had a milk intolerance, but by the age of six months they described him as “unsuccessful”.
And after he was hospitalized with pneumonia at the age of two in March 2018, Caitlin felt “in her stomach” that his health was not right.
But it wasn’t until the first lockdown in June last year that the full horror of what was happening to the then four-year-old Aiden emerged.
Caitlin said, “He didn’t care about his favorite food and slept all the time. I thought the pandemic would hit him.”
Increasingly tired, she took him to Queen Alexandra’s walk-in A&E center, where a nurse discovered his flare-up nostrils – often a sign of lung problems – and he was taken to the children’s examination unit.
Caitlin continued, “The doctors said they could feel that his liver was enlarged. My first thought was cancer. I asked if I could call Josh and ask him to come.
“The fact that they were in agreement during the pandemic made me realize how serious it was.”
An X-ray showed Aiden had pneumonia in both lungs, and an echocardiogram – a scan that looked 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, squeeze his stomach, cause loss of appetite, and also enlarge his liver.
“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 – in which the main veins that connect the heart and lungs either shrink or loosen completely – or the less severe pulmonary valve stenosis, which is easier to operate.
Caitlin was still digesting the terrible news as she prepared to give birth to baby Logan.
She said, “I had to go home and prepare for the birth. It was so hard to say goodbye to Aiden. “
She continued, “He was a very intelligent little boy who knew all of the planets in the solar system, so I was just trying to distract him. I didn’t want him to be scared.
“He seemed pretty good because he knew there were people in hospitals.”
Joshua, who stayed with Aiden the night before Logan’s birth, was given 20 minutes with his wife after the caesarean section.
“Josh knows how to calm me down. He reminded me that Aiden is the best place for him, ”she said.
Logan was born on June 30th as a happy, healthy 7-pound baby.
Caitlin said, “When I first grabbed him, Aiden was still in the back of my mind – but I had a few precious moments just to focus on him and how light he was on my chest.”
Meanwhile, Aiden has been transferred to Southampton General Hospital, which specializes in heart disease.
And after a few days, on July 3rd, the two brothers met for a fleeting moment – due to lockdown restrictions – on Aiden’s hospital bed, where Logan lay on his lap and the boys cuddled together.
Caitlin said, “Before moving to Southampton, Aiden asked me,” Where’s Logan? “He really wanted to meet him and when he finally did he was so happy.”
She added, “He appeared to be more alike because the doctors drained his excess fluids. He sang and danced and taught Logan PJ Masks, his favorite cartoon.
“He was an absolute natural to be a big brother.”
Unfortunately, moments later, the doctors brought the devastating news that Aiden had pulmonary vein stenosis. Although they couldn’t tell how long he might be left, Aiden was already much older than most children with the disease.
Caitlin said, “I’m pretty sure they already knew, but didn’t tell us until after I had Logan and the two of them met.
“They said there were four veins connecting the heart and 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 immediately froze while I had every single reaction at once. I screamed, screamed, jumped away from the doctors – I even vomited. “
The lower left vein was 2mm wide when it was supposed to be 6mm, but doctors told the couple they could insert a stent through a vein in his groin to open it.
Warning that it was very risky due to several complications, including the fact that he was only 95 cm tall and 12 kg – which the NHS classifies as very small for his age – doctors said they would have to pierce his already weakened heart .
Even so, the three-hour procedure on July 7th went so well that Aiden did not need intensive care and earned them valuable family time.
When the lock was first lifted, they enjoyed trips to nearby farms and zoos like Drusillas Park in East Sussex.
Caitlin said, “Aiden had to take medication every day, but Logan was a good distraction for him.
“He was at high risk of contracting Covid so we had to find a balance so that he could enjoy the rest of his life while protecting him at the same time. I didn’t want to look back and regret that we didn’t do something together. “
On October 17th, days before his fifth birthday on October 22nd, Caitlin and Joshua took Aiden to the Winchester Science Center & Planetarium space exhibition.
But unfortunately, shortly after his tiredness returned.
In November, he was given a feeding tube through his nose to improve his diet, and doctors told his parents that his liver was swollen again.
Caitlin said, “It was a shock when the doctors made another echo and told us his heart was in worse shape than it was in June because his latest scans had shown it got a little better every time.”
He had to replace his existing stent and make another fit to the vein on the right side of his heart.
While the first procedure was being performed on November 26th, placing a new stent proved impossible.
This time Aiden was being ventilated in the intensive care unit and doctors warned his parents that he might never jump off it.
Caitlin recalled, “It was terrifying to see how difficult it was to breathe when they took him off the ventilator. He was so strong that he had to be held for throwing himself off the bed.
“Josh and I clung to each other, watching his stats drop, expecting them to be flat any second.”
But he drove through and left Southampton General on December 10th in an ambulance decorated like Santa’s sleigh with an elven-clad paramedic ready to take him to the Naomi House Children’s Hospice near Winchester, Hampshire , bring to.
Caitlin recalled, “He loved Christmas, and we told him it was so good that Santa had given him a special holiday.
“There was nothing left the hospital could do.”
She added, “If we went to Naomi House, at worst we could be family. Aiden struggled to adjust to his new breathing equipment and they helped us deal with it. “
Thanks to Naomi House, Aiden even received a special visit from Santa in a helicopter, who gave him lots of toys.
Caitlin said, “It meant the world to him. People really got together to give him the best of the past few days. “
The family went home on December 15 and celebrated Christmas the day after, surrounded by loved ones who showered Aiden and Logan with gifts and love.
Make-a-Wish UK Tim Peake even organized to make Aiden a special video message and get him an Oculus virtual reality headset that made it look like he was in space and a star named in his honor in the Hercules constellation has been.
Caitlin said, “He loved everything.”
She added, “The last time I bathed him, we pretended he was washing his hair like he was an astronaut after Tim gave him a ‘space secret’ about the ‘no-rinse’ they used. -Shampoo said. “
On December 17th, the Aiden family stopped wearing the oxygen mask, which kept him alive but made his face very sore.
“It was a struggle to bring it down on him that night. He said to me, “Mom, I don’t want to wear the mask anymore,” said Caitlin.
She continued, “If I’m honest, I wouldn’t have made that decision – so it was a good thing he made it. The ward nurses pulled us aside and said it was more humane to let him take it off.”
Caitlin’s sister, who was training to be a nurse, came by that evening to help, expecting him to die, but, as always, resisted the odds.
Caitlin said, “The next morning he just sat up and said,” Can I have a Haribo? “And my sister was really surprised.”
She added, “That day was beautiful. We played with all of his Christmas toys and he played with Logan. That was his gift to us – to see him return to his old self. “
Over 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, far away.
Caitlin remembered slipping away on the evening of December 20th and said, “Around 9 p.m. Josh and I checked him in and we turned to face each other and found we weren’t going back downstairs.”
She continued, “We have two cats and they haven’t left Aiden’s side all day. I lay down next to him and Josh read some stories.
“There were only three of us while Logan slept in his crib.
“We called the nurses because he slipped away. He was in my arms and when they arrived they helped me put him to bed and left the room while we had our moment. “
She continued, “I had my hand on his chest, felt his last heartbeat, told him how much we loved him and sang” You are my sunshine “because he loved that song.”
The loss of Aiden, who was buried on January 15, left a huge hole in the family’s life.
Caitlin said, “Whenever doctors said,” He’s not going to come back from the hospital, “he proved they were wrong.”
She continued, “He was such a smart, caring little boy. Everything about him makes me proud.
“Logan is too young to understand everything, but he looks at Aiden’s photo, smiles and reaches for it. They had such a strong bond.”
This month the family will remember Aiden on a visit to Portsdown Hill – a scenic lookout near their home – to see his special star.
Caitlin said, “We will always love him and take him with us all our lives.
“Hopefully his star, like his memory, will shine for eternity.”