Noah Phelan's parents were hit with the shocking news that their unborn baby would need open heart surgery as soon as he was born when mum Josie Lloyd was just four months pregnant. At her 20-week anomaly scan, Josie and Connor were taken to one side and told the sonographer had found something not right with their baby, news that all expectant parents dread hearing.
Mum Josie said her panic spiralled when she was told it was their little boy's heart. Josie's first thought was: "You can't function without your heart."
Josie, from Pontygwaith in the Rhondda, said: "I was quite late finding out I was pregnant. We had our first scan just a few weeks before our 20 week scan. And the sonographer was taking their time and then they said 'I think there is something not quite right with his heart."
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She was referred to a foetal consultant specialist at Cardiff's University Hospital of Wales where they confirmed the sonographer's findings. The young couple, aged 20 at the time, were told that their little boy had a congenital heart defect.
Doctors also discovered a hole in Noah's heart, and a transposition of the great arteries. This means Noah's heart was essentially "upside down", Josie, 22, described, and was pumping non oxygenated blood around his body, as opposed to the oxygenated blood that it needed.
Upon hearing the news, Josie said she just went into a survival mode and tried to remain positive. A plan was set in place for her to deliver the baby in Bristol where he would have surgery to address the problems in the first few days of his life.
She was monitored weekly throughout her pregnancy and was told he was measuring big throughout. She was due to be induced to make sure she wouldn't go passed her due date but went into natural labour at 38 weeks.
Josie's mother called an ambulance straight away and she was taken to Cardiff University Hospital of Wales for monitoring. Her labour was progressing slowly so she was allowed to make her own way to Bristol to give birth.
"It was the first week of the pandemic, there were no cars on the road, no one could go anywhere, so we knew we could make it there in half the time and we would be safe.
"They prepared us before he was born. They said he would be born quite blue and they said I wouldn't be able to hold him as they would have to rush him off so quickly. But thankfully when I gave birth I was able to hold him for a couple of minutes before they took him off me and I'm so grateful for that.
"He was just hooked up to so many wires and so many tubes. We couldn't even dress him because it would interfere with so much. We hardly held him because it was a mammoth task for the nurses to untangle him to give to us."
Noah was born on March 31, 2020 at 1.50pm. Josie said despite them estimating he would be a big baby throughout her pregnancy, Noah was only 5lb 6oz born, and judged too small to have the heart surgery he needed straight away.
Josie added: "The team in Bristol were back and forth trying to decide whether to operate that week as originally planned or whether to let him get a little bit bigger first. The bigger he was the less complications that would arise."
A few weeks went by and doctors decided to delay the procedure and Josie and Connor, 22, were able to take Noah home for a week with a "huge bag of medication" to keep him going. Up until that point, because of hospital visiting restrictions due to coronavirus, Connor and Josie had only ever spent time with Noah alone and not together as a three. They returned for his procedure six weeks later, still at the height of the pandemic.
"They let us walk down with him and I handed him over to the anaesthetist. He said to tell him you love him even though he is only a baby and can't understand. They say you never know what is going to happen."
Josie and Connor went to wait in a apartment they had been given close to the hospital and were told it would be about 3-4pm before they heard anything. But by 5pm they still had not had an update, so they went to the ward where he had been staying to see for any news.
"As soon as we got there, it was a ward where all children with heart problems were on, and if ever they needed to work on a child they would send all the parents away. And they were working on someone and I knew it was Noah."
Noah's procedure had been a success, however when he was being wheeled out of theatre he went into cardiac arrest. His chest remained open from the procedure and doctors rushed to fix a clot that had occurred. Josie described how doctors told her they literally had minutes to save him.
"I am quite strong minded and was trying to stay strong for the two of us. They said it was only one parent at a time visiting but they let us see him together quickly. The nurse warned us that he didn't look like the same baby because of his operation, he was swollen.
"It was hard, they prepared us as much as they could and showed us photos of other babies who had the operation and told us other parents accounts so we knew what to expect, but when it is your own child it is different, you just want to take their place for them," Josie said.
Within days, Noah opened his eyes and was gradually weaned off medication and support and transferred from intensive care. Around six weeks after his operation he was allowed home.
Almost three years on, little Noah is thriving and has turned into a "funny and clever" little boy. He is still seen by consultants for his heart from time to time, but they are hopeful he won't need any further procedures but he has been left with some hearing loss from his time in NICU.
Since their experience, Josie's mum and step dad have both run half marathons to raise money for British Heart Foundation and the Grand Appeal, who provided them with housing during Noah's hospital stay.
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