Baby diagnosed with hole in heart after suspected acid reflux

By Jake Meeus-Jones

A newborn baby was diagnosed with a hole in his heart, which doctors originally thought could have been acid reflux.

Tansy Simpson, 40, gave birth to Atlas, now 1, following a long journey to conceive.

Shortly after birth, he struggled with feeding and cried for long periods, which Tansy and her partner, Matthew Jukes, 49, were told was likely due to common issues such as reflux.

When Atlas’ condition didn’t improve, a health visitor referred him to a feeding support team and then to a pediatrician at Evelina London Children’s Hospital, part of Guy’s and St Thomas’ NHS Foundation Trust.

The pediatrician noticed unusual breathing and advised the couple to monitor it.

Later that night, Atlas developed sharp breathing and began vomiting, prompting his parents to call an ambulance. He was taken by emergency lights to the children’s emergency department at St Thomas’ Hospital, where X-rays revealed an enlarged heart and fluid on the lungs.

Further tests confirmed he had coarctation and ventricular septal defect (VSD), commonly known as a hole in the heart.

Coarctation is a congenital defect that narrows the aorta — the main blood vessel carrying blood from the heart to the lower body — while VSD affects the connection between the heart’s two main pumping chambers.

Atlas later underwent open-heart surgery and has since been given the all-clear.

Tansy, a filmmaker and university lecturer from London, said: "Atlas had started feeding properly, but he was still in newborn clothes and so much smaller than babies the same age.

"I felt like an awful mom who didn’t realize her baby even had a cold and told the pediatrician I didn’t think he did.

"That was when the pediatrician started to worry something was wrong."

After being taken by emergency lights to the children’s emergency department at St Thomas’ Hospital, Atlas underwent tests.

Before the diagnosis, Atlas' initial white blood cell count and bilirubin levels tests didn't show anything wrong, so doctors ordered an X-ray.

Atlas’ X-ray results came back and showed he had a very enlarged heart, and his lungs were flooded with fluid.

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The cardiology team quickly performed more tests — an EKG and an echo — which confirmed that Atlas was suffering from coarctation and a ventricular septal defect.

Tansy said: "His heart was having to work extremely hard to pump blood around his body, which was stopping him from growing normally, as well as putting huge strain on his system."

A week after being admitted to Evelina London, Atlas received open-heart surgery that lasted for over seven hours.

The surgery to repair his heart coarctation involved cutting out the narrowed part of the aorta and stitching it back together without that section.

Surgeons also repaired a large ventricular septal defect (VSD).

Tansy said: "Handing Atlas over to the surgical team was hard, but the empathy and care we received from the team allowed us to trust that Atlas would be okay.

"We had no time to research or even fully understand what was wrong with Atlas; we just knew he needed surgery, and he was getting it from the best team possible."

The surgery was a success, and after four weeks in the hospital, Atlas was discharged.

Now, over a year later, he has been given the all-clear with no long-term issues expected and only a routine review needed once a year to check on his progress.

Tansy said: “I know every mom says this, but he is the happiest, bounciest boy.

"Apart from his scar, you would never know that he was so seriously ill, and it’s all thanks to the incredible team for saving his life."

And to say thanks, Tansy has decided to raise money for Evelina London when she takes on the London Marathon on Sunday, April 26.

She said: "I’ve never run a marathon or anything like it before, and as a working new mom, it’s been pretty tough to find the time to train.

"But Evelina London gave us back our son, so I wanted to take on this challenge to give back in whatever small way I can."

Evelina London intensive care consultant, Dr. Joanne Perkins, said: "Atlas made steady progress during his time in intensive care, with his parents and grandparents there to help, comfort and to support him.

"It is a privilege to look after children like Atlas in intensive care, and the very best bit is when they leave us and get to go home.

"It’s amazing to see parents like Tansy take on a massive challenge like the London Marathon to raise money for Evelina London Children’s Charity, thanks to whom we are able to provide care above and beyond what the NHS is capable of and give the best start in life to as many children as possible."