The heartbroken parents of a baby boy have paid tribute to their "perfect" son.
Chloe Bakewell, 25, and Alex Price, 31, from Ellesmere Port, found out during Chloe's 20 week anatomy scan there was an issue with their baby's heart. After a further scan at Liverpool Women's Hospital it was confirmed baby Amias had Hypoplastic Left Heart Syndrome (HLHS).
His parents were told Amias' particular case "was a 10 out 10 in severity". HLHS is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly.
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The condition is a fairly rare congenital heart disorder that occurs in 1 in 4,000 babies. It accounts for only 1% of all congenital heart defects and there is no known cause for the condition. In some cases HLHS is treatable, but never curable.
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 must undergo at least three open heart surgeries within the first few years of life, without which babies sadly die. The surgeries can offer a prolonged, better quality of life, but they cannot correct the abnormality.
The current life expectancy of children with HLHS who survive the surgeries stands at 20 to 30 years. Sadly, as was the case for Amias, not all babies born with HLHS 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’ 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’ condition began to worsen and he was urgently transferred with Alex to Alder Hey Children’s Hospital.
"Devastatingly, Amias’ 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."
Baby Amias died later that evening. Chloe said she and Alex chose their son's name as it means "loved".
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."
Chloe and Alex are now keen to raise awareness of HLHS as they said it is a condition not many people have heard of. Chloe said this can make receiving a diagnosis "a bit more difficult".
She 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’ 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.
"f you hear Amias’ 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."
Close friend John Preston has also set up a GoFundMe page to help Alex and Chloe during this difficult time. To donate to the fundraising page, please click here.
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