Doctors had said they thought nothing was seriously wrong, but two signs showed the truth
Parents who thought their six-week-old baby had a cold were told by doctors to watch for two symptoms. When baby Atlas was struggling to breath, his parents Matt Jukes and Tansy Simpson had no idea he did not have a virus but was actually suffering from two congenital heart defects, and within days he had open heart surgery.
The couple, from Peckham, London, found themselves living at a hospital for a month. “We felt scared, devastated, heartbroken, shocked and blindsided,” Matt said. “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.”
When Atlas was born he had mottled skin, jaundice and slightly blue hands and feet. He struggled to feed, which doctors attributed to a tongue tie, and from his second week vomited consistently after being fed. It was 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 said.
“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.”
Atlas had been discharged by midwives and medics had reassured the family that he was well. But his parents became increasingly concerned and at six weeks old, his symptoms worsened; by now he was vomiting and refusing to feed.
They had another appointment with a doctor – and it was then that they realised something was really wrong.
“Atlas was crying a lot so the doctor sent me out with the baby and talked to my wife,” Matt said. “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 told to watch out for symptoms including laboured breathing and changes in nappy habits. The next morning, Tansy woke Matt around 4am.
Atlas had vomited as soon as he started 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 ended up staying at Evelina Children’s Hospital for 28 days and Atlas had open heart surgery at eight weeks, six days after 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 was on a feeding tube and had to be given a range of drugs. “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.”
In the middle of the worry and chaos, artist Matt had started sketching for his son as he sat with him late at night. The pictures were the start of an art series he’s now donating to the anonymous heART project, a charity auction run by Heart Research UK.
“While I was in the hospital, I would make up stories that I would tell Atlas,” Matt said. “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 general term applied to a range of heart defects; around one in 100 babies are born with the condition in the UK each year. When Heart Research UK was founded in 1967, 80% of babies with a congenital heart defect would die. Today 80% of children survive.
Matt’s sketches will go into the heART auction alongside work by Dame Zandra Rhodes DBE RDI, Jamie Hewlett, Russell Tovey and The Cure’s Robert Smith. Bidders do not know who has created the work until bidding has ended.
Today, Atlas is doing very well, and earlier this year, his cardiology review found that the remaining hole was now of a size they wouldn’t operate for. He has now come off all medication. The family wants to raise awareness of heart research and to encourage parents to always push for answers if their children experience troubling symptoms.
In addition to the fundraising auction, cinematographer Tansy is running the London marathon to raise money for the Evelina to support their work. “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 says.
You can find out more about the anonymous heart project here. Donate to Tansy’s marathon fundraiser here: https://www.justgiving.com/page/t-simpson-2
Learn more about Matt’s artwork at https://www.mattjukes.ink/shop/sat-with-atlas-series
