A tribute has been paid to a 'brave little boy' who tragically died in hospital shortly after his birth due to a heart disorder.
Amias Nicholas Price was diagnosed with a congenital heart disorder known as Hypoplastic Left Heart Syndrome (JLHS). Parents Chloe Bakewell, 25, and Alex Price, 31, described Amias as their hero who 'fought incredibly hard throughout this journey'.
The heart problem was discovered during Chloe's 20-week anatomy scan while an additional scan at Liverpool Women's Hospital confirmed that Amias had HLHS. His parents were told that Amias' case "was a 10 out of 10 in severity", the Liverpool Echo reports.
The condition is an incredibly rare disorder that occurs in roughly 1 in 4,000 babies, it accounts for only 1 per cent of all congenital heart defects. HLHS can sometimes be treated, however, it can never be completely cured.
Chloe said: "Finding out Amias had such a serious congenital heart disorder came as a shock, and was nothing short of terrifying. HLHS was a condition we had never even heard of, so there was a lot of information to digest and process; but Amias was our brave little boy, and we wanted to give him the chance he deserved.
"Upon receiving our diagnosis we were immediately referred to Claire House who, as well as the medical teams involved in our care, have been an incredible support throughout this process."
Babies born with the condition have to undergo at least three open-heart surgeries within he first few years of life - without this, a baby born with the condition will sadly die. Even so, not all babies, such as Amias, meet the necessary criteria to undergo such surgeries.
Chloe added: "The rest of our pregnancy was scary. We had been told that due to the severity of Amias’s condition, there was a risk that he may pass away before birth; but Amias continuously showed us how strong he was.
"Despite the severity of his condition, he continued to grow beautifully, would wriggle away happily during our scans, and we even saw him practicing his breathing during one. He was fighting to meet us. We continued to look for joy where we could, watching Amias kick away in my belly, singing and reading to him, and held on to hope."
Amias Nicholas Price was born on March 9 at 6.37am. He weighed 6lb 11oz and "like the truly courageous little boy he was", Amias handled labour as well as his parents could have hoped for.
Chloe said: "He looked perfect. He was born crying beautifully, and I was even allowed a few minutes of skin-to-skin cuddles before he was taken to the neonatal unit. During his time in Liverpool Women’s neonatal unit, Amias’s condition began to worsen and he was urgently transferred with Alex to Alder Hey Children’s Hospital.
"Devastatingly, Amias’s particular case of HLHS was too severe to qualify for surgery and after bravely holding on for his Mummy to arrive, we spent time talking to him, reading to him, singing to him and cuddling him, before he passed peacefully that evening surrounded in love."
Amias tragically died later that evening. Paying tribute, Chloe said: "And to our Amias, you are the bravest little boy we know. You fought incredibly hard throughout this journey, and we are so proud of you. You are our hero.
"We chose your name because it means loved, and that’s exactly what you are, so very loved. Always. We will miss you for the forever that we should have had together."
Now, the parents are hoping to raise awareness of HLHS. Chloe added: "It can mean trying to process the information yourself, whilst also trying to explain the diagnosis to others, and help them understand the severity of it. We hope that maybe one day, medical research will find answers that prevent other families going through what we have.
"But until then, we will continue to tell Amias’s story and raise awareness of his condition; in the hope that other families who may receive the diagnosis in the future find those around them have pre-existing understanding, and maybe in turn, feel a little less alone.
"If you hear Amias’s story, please take a few moments after it to visit websites such as Little Hearts Matter, or the British Heart Foundation and read a little further about Hypoplastic Left Heart Syndrome (HLHS)."
The parents also wanted to thank the medical professionals Arrowe Park Hospital, Liverpool Women’s Hospital and Alder Hey Children’s Hospital who cared for Amias, Chloe and Alex.
Chloe said: "The care and compassion you showed our family will never be forgotten. We would also like to say a special Thank You to the Claire House Team, and draw attention to the incredible work that they do.
"From Memory Bears, Complimentary Therapies, time in their Bereavement Suite and general emotional support, we could not have gotten through it without them. Their services have offered us comfort at the most difficult time, and ultimately, they went on to give us time with Amias that life took away. We owe them everything for that."
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