Parents of a six-week-old baby, who they thought had a common cold, were given a shocking diagnosis by doctors. Baby Atlas, son of Matt Jukes and Tansy Simpson, was struggling to breathe, leading his parents to believe he had a virus.
However, the reality was far more serious – Atlas was suffering from two congenital heart defects and needed open heart surgery within days.
The couple, hailing from Peckham, London, found themselves residing in a hospital for an entire month. “We felt scared, devastated, heartbroken, shocked and blindsided,” shared Matt.
Read more: Parent’s nightmare as 4-year-old suffers spinal injury at soft play
Read more: Common driving manoeuvre ‘set to be banned across England’
“It was incredibly tough. We were in a haze reacting to the situation and holding our boy close.
“We had to carry him down to surgery and hand him over and this was the hardest moment. You know that this is essentially the start of his healing and is life saving, but every decision, diagnosis, explanation about our son was conducted at the end of a hospital bed in a shared ward. Imagine that,” reports MyLondon.
Upon birth, Atlas exhibited mottled skin, jaundice and slightly blue hands and feet. He also struggled with feeding, which doctors initially attributed to a tongue tie, and from his second week, he consistently vomited after being fed, believed to be caused by silent reflux.
“Around week five of his life he suddenly became very difficult, with a lot of crying and difficulty settling,” Matt added.
“Feeding also became more difficult and we noticed he didn’t seem to be gaining weight. A lot of this was attributed to the tongue tie; though at this time my wife started to notice that he was unable to feed for long and stay awake for long when feeding.”
Despite being discharged by midwives and reassured by medics that Atlas was well, his parents grew increasingly worried as his symptoms worsened over six weeks. By this point, he was vomiting and refusing to feed.
After another doctor’s appointment, they realised something was seriously amiss.
“Atlas was crying a lot so the doctor sent me out with the baby and talked to my wife,” Matt recalled. “This is when Tansy knew something was wrong, as she told me she felt the seriousness of the doctor, but also the fact that there wasn’t a clear diagnosis meant we were being sent home.”
The family was advised to monitor for symptoms such as laboured breathing and changes in nappy habits. The following morning, around 4am, Tansy woke Matt.
Atlas had vomited immediately upon starting to breastfeed, was limp and had very distressed breathing. The couple called an ambulance.
At hospital, Atlas was diagnosed with a congenital heart disease: a coarctation of the aorta, and a large ventricular septal defect (VSD).
The family spent 28 days at Evelina Children’s Hospital, where Atlas underwent open heart surgery at eight weeks old, just six days following his diagnosis. “Post surgery ICU, infections and recovery are long, overwhelming and heartbreaking,” Matt said.
“Seeing your child sustained by machinery is indescribable.
“Then reaching the point where they can be discharged is overwhelming. You want nothing more than to be at home but now you are responsible without the support of the hospital team. When we were discharged Atlas had to be fed every three hours and had a regimen of seven medications throughout the day.
“We’d gone from having all these people looking after our son to suddenly being the ones responsible for him. That was one of those moments when we thought, ‘are we really ready for this?’ But I also remember one of the doctors saying, ‘We wouldn’t send you home if we didn’t think you could do it.’ That really stuck with me.'”.
Atlas required a feeding tube and multiple medications daily. “By the time he hit six months the permanent crying ceased,” Matt said.
“We were greeted by this joyful happy curious boy. He is pure joy.”
During those anxious nights, artist Matt began creating sketches for his son whilst sitting beside him. These drawings have now become part of an art collection he’s contributing to the anonymous heART project, a charitable auction organised by Heart Research UK.
“While I was in the hospital, I would makeup stories that I would tell Atlas,” Matt shared. “They were about the places we would go and the adventures we would have in far off magical places, the places we would escape to.
“While I told these stories I would sketch the places making them real. These are not necessarily the happiest of stories, but they represent intimate moments between my son and I and were as much about me processing everything that was happening as they were for him.”
Congenital heart disease is a term used to describe a variety of heart defects; approximately one in 100 babies are born with the condition in the UK each year. When Heart Research UK was established in 1967, 80% of babies with a congenital heart defect would not survive.
Today, 80% of children do survive.
Matt’s sketches will be included in the heART auction alongside pieces by Dame Zandra Rhodes DBE RDI, Jamie Hewlett, Russell Tovey and The Cure’s Robert Smith. Bidders will only discover who created the work after the bidding has concluded.
Today, Atlas is doing remarkably well, and earlier this year, his cardiology review revealed that the remaining hole was now of a size they wouldn’t operate for. He has now been taken off all medication.
The family aims to raise awareness of heart research and to urge parents to always seek answers if their children exhibit worrying symptoms.
Alongside the fundraising auction, cinematographer Tansy is also taking on the London marathon to raise funds for Evelina. “Tansy and I decided it’s important to talk about these things, because if our experience and our story can help someone else with their own journey and challenges, even if it’s something different, then it’s worthwhile sharing,” Matt explains.
More information about the anonymous heart project can be found here. Donations to Tansy’s marathon fundraiser can be made here: https://www.justgiving.com/page/t-simpson-2.
To learn more about Matt’s artwork, visit https://www.mattjukes.ink/shop/sat-with-atlas-series.
Read more on Coventry Telegraph
