A mum who gave birth to twin boys with two different types of heart disease has spoken about what it's like not knowing if your babies will live or die.

Storm Sanson, from Lordswood in Chatham, had her sons five-and-a-half weeks early at Evelina London Children's Hospital in London on September 23, 2022.

The 26-year-old and her partner, Jamie Stephenson, found out their boys, named Artemis and Perseus, each had a form of congenital heart disease – a general term for a range of birth defects which affect the way the heart works – when she was 22 weeks pregnant.

Storm, a special educational needs teacher at the Marlborough Centre in Hoo, said: "I'd never heard of congenital heart disease.

"But when I learned that it affects one in every 100 babies in the UK I was shocked to hear how common it was yet in disbelief about how little it was talked about as it is life changing for babies and their families."

Artemis, who was named after the Artemis Fowl book character, weighed just four pounds and three ounces when he was born.

He was diagnosed with a ventricular septal defect (VSD) which meant there was a large hole in his heart.

His slightly bigger brother Perseus, who was named after the Percy Jackson book character, weighed five pounds and three ounces.

He was born with pulmonary stenosis, which meant the pulmonary valve in his heart was stiff, hindering his blood flow.

Storm, who also had a three-year-old daughter named Rosie, said: "Arty had a 3.6 millimetre hole in his heart, a huge hole for such a tiny baby.

"We were told that he would go into heart failure at six weeks old, but because he was so small we had to wait until February 1, when he'd put on more weight, for him to have open heart surgery.

"However, with Percy's condition, there was a huge pressure on his heart and blood wasn't flowing to his lungs or around his body properly as soon as he was born."

Due to the babies' conditions, Storm couldn't give birth naturally and after delivering Percy he was taken to the neonatal unit immediately and given oxygen support.

Then, at just four days old, he had surgery that saw doctors put a balloon into his heart and expand it into one of his valves.

Storm said: "It was quite scary to go through, especially when you've got such a little baby.

"Percy was teeny tiny and it was quite frightening for him to go through that."

When the boys were diagnosed Storm was told by doctors that she could choose to terminate the babies.

However, although finding the situation upsetting she knew she wanted to have the boys as she already knew their gender and their names.

She said: "I do understand from the medical point of view why the doctors say about a termination because it is life threatening and they take the condition very seriously.

"But I feel like the rest of the world doesn't.

"When you have poorly babies there are things that you wouldn't ever mentally prepare for such as having to sign your child's life away when they have surgery.

"You have to sign a form to say you accept the risk of stroke, death and brain damage.

"My partner has also had to take a lot of time away from work because we have twins, poorly twins at that.

"So when Arty was in the hospital, someone needed to be with Percy. We've been blown away with how unforgiving the world is when you've got poorly kids."

Storm and Jamie feel that there isn't a lot of help for families who have critically-ill children.

Their friends and family felt the same and even set up a GoFundMe page to help the parents stay at their twins' bedside without worrying about bills.

She said: "There's lots of access for families who are dealing with cancer and things like that but there are only a couple of charities for cardiac babies.

"I feel that we have sick babies with a condition that people really don't take seriously.

"When we tell people that we're thinking about applying for disability allowance they ask why, as if my sons aren't critically-ill and in and out of hospital.

"Once babies with this condition are out of surgery they look normal because you can't see their hearts or the big scars left behind.

"But even if it's corrected, these children are still virtually autoimmune.

"This means that if they get poorly, it hits them 10 times harder and because of that we'll have to be really careful with everyday things such as nursery placements when I return to work.

"Even after the doctors fix the problem, my twins will forever have to have a specialist heart consultant."

Storm gave her sons their strong, yet unusual names, as she feels they've "fought hard to be on this planet".

She added: "It just makes me so angry that my two innocent babies are going through hell.

"I just want more people to be aware of this disease that isn't uncommon.

"I want people to understand what it means for the children that have heart conditions and their futures."