Film maker mum to run London Marathon in aid of Evelina London

A film maker and university lecturer is set to run the London Marathon to support Evelina London Children’s Hospital, who saved her son’s life last year.

After a long journey to get pregnant, Tansy Simpson had a difficult childbirth and baby Atlas had some issues as a newborn.

Atlas had trouble feeding and long periods of crying, something which the new parents were advised was likely the result of normal issues such as reflux.

It was when Atlas was five weeks old and Tansy met a family with a baby the same age that she started to worry.

The 40-year-old said: “Atlas had started feeding properly but he was still in newborn clothes and so much smaller than babies the same age. The health visitor was concerned he was eating and not putting weight on and that he was still jaundiced.”

Tansy was referred to a feeding support team and then a paediatrician at Evelina London, who noticed that Atlas was breathing strangely. Tansy was asked how long his cold had been going on for.

Tansy said: “I felt like an awful mum who didn’t realise her baby even had a cold, so I said I didn’t think he did. That was when the paediatrician started to worry something was wrong.”

Concerned with his breathing, the doctor scheduled told Tansy to look out for unusual breathing and scheduled someone to visit them at home the next day. But that night Atlas’s condition started to deteriorate, with sharp inward breathing and vomiting. Tansy and her partner Matthew called an ambulance, and they were taken to the children’s emergency department at St Thomas’ Hospital.

Tansy said: “The doctor said Atlas’ initial tests didn’t show any major issues, but she still thought that something was wrong and so ordered an X-ray, which isn’t normally done for babies with his symptoms.”

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

The cardiology team quickly performed more tests which confirmed that Atlas was suffering from coarctation and Ventricular Septal Defect (VSD, commonly known as a ‘hole in the heart’). Coarctation is a congenital heart defect which restricts the aorta, the large blood vessel which carries blood from the heart to the lower body, while VSD impacts communication between the two large pumping chambers in the heart.

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.”

Congenital heart defects are typically diagnosed before birth, which means that medical teams are able to plan treatment and prepare parents ahead of time. With Atlas being diagnosed at six weeks old it was vital he received treatment as soon as possible.

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

Tansy said: “Handing Atlas over to the surgical team was hard, but the empathy and care we received from the team at Evelina London allowed us to trust that Atlas would be ok.

“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.”

Before the surgery, Tansy and Matthew were allowed to see the unit where Atlas would recover and speak to a young girl who had the same procedure, so they could visualise and understand the process and the different machines Atlas would need after the operation to fix his heart.

Tansy said: “They put so much care and consideration into how we were feeling, from letting us see the unit to helping us make a diary of his time at Evelina London. We’re both creative people so it was wonderful to have the chance to make something to mark our time at Evelina London that we can show him when he’s older.”

The surgery was a success and after four weeks Atlas was discharged from Evelina London.

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 mum 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 at Evelina London for performing a miracle and saving his life.”

After their experience at Evelina London, Tansy was looking for a way to say thank you and give back to the hospital.

It had been years since she had done any running and when she received a place in the London Marathon to support Evelina London Children’s Charity Tansy was daunted at first.

She said: “I’ve never run a marathon or anything like it before, and as a working new mum 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:

“Intensive care can be a strange space, with lots of noises and alarms and unfamiliar language. Especially when a baby is born with something like congenital heart defects it can be difficult for parents to understand what is happening.

“Through everything, Tansy and Matthew were there for Atlas, staying with him while he was sleeping and giving him the care he needed.

“Atlas made steady progress during his time in intensive care, with his parents and grandparents there to help to 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.”