Heartbroken Parents Pay Tribute To Their 'brave Little Boy' Who Died Shortly After Birth
The devastated parents of a baby boy with a serious heart disorder have paid tribute to their 'brave little boy' who died in hospital shortly after his birth.
Amias Nicholas Price from Ellesmere Port had been diagnosed with a congential heart disorder known as Hypoplastic Left Heart Syndrome (HLHS). His heartbroken parents Chloe Bakewell, 25, and Alex Price, 31, have described Amias as their hero, having 'fought incredibly hard throughout this journey'.
They found out there was an issue with Amias's heart during Chloe's 20 week anatomy scan. A further scan at Liverpool Women's Hospital confirmed that Amias had HLHS, the Liverpool ECHO reports.
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His parents were told Amias's 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.
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'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."
© Chloe Bakewell and Alex Price Amias Nicholas Price, from Ellesmere Port, died on March 9 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."
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'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."
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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Brown County Girl Gets Life-saving Transplant
GEORGETOWN, Ohio — A little girl in Brown County, Ohio, recently received a new heart after being on the path to a transplant since she was first diagnosed with a heart defect.
Nyla Smith is a six-year-old girl from Brown County who was born with a critical congenital heart defect. Congenital heart defects are diagnosed based on heart conditions at or shortly after a child's birth.
According to Nyla's Journey Facebook page, she was diagnosed with hypoplastic left heart syndrome shortly after birth. HLHS is a condition that affects a number of structures on the left side of the heart that has not fully developed, according to the Centers for Disease Control and Prevention.
Typically, the right side of the heart pumps oxygen-poor blood to the lungs and the left side pumps oxygen-rich blood to the rest of the body. There are also two openings between the sides of the heart that normally close a few days after birth, according to the CDC.
In a baby with HLHS, the left side of the heart does not pump oxygen-rich blood to the body. Oxygen-rich blood bypasses the left side of the heart and goes to the lungs during the first days of life, according to the CDC.
When the openings are present, babies with HLHS might not have difficulties in the first few days of life. Once the openings have closed, it is difficult for oxygen-rich blood to be distributed throughout the body.
Symptoms usually present themselves once the openings have closed. These can include difficulty breathing, pounding heart, weak pulse, and bluish skin color, according to the CDC.
The CDC estimates 1,025 babies are born with HLHS every year. Some babies get the condition through changes in genetics or chromosomes. It is also believed to be caused by environmental factors or what the mother has ingested during pregnancy. In most cases, it is difficult to determine the exact cause of HLHS.
Babies with HLHS must go through three surgeries to restore heart functions. The surgeries are the Norwood Procedure, Bi-directional Glenn Stunt Procedure, and the Fontan Procedure. Typically, these are all done within three years.
Nyla had the Norwood Procedure done at six days old, the Bi-directional Glenn Stunt Procedure at four months old, and the Fontan Procedure at three years old, according to Nyla's Journey.
Between the surgeries, Nyla had multiple heart catheter procedures and echo-cardiograms, bedside tests to determine the amount of oxygen in a baby's blood. Posts and updates were given on Nyla's Journey each time these occurred.
In the last several months, Nyla's family has been raising money to get her a new heart, according to Nyla's Journey. In February, Nyla's doctors told her family that her antibody levels needed to be at 10 percent before her body would accept a new heart. Her antibody level was at 75 percent at the time.
To prepare to receive a new heart, though one had not yet been accepted, Nyla had to go through desensitization therapy. Her first intravenous immune globulin infusion was in late January, according to Nyla's Journey. The process takes seven weeks to complete.
Over the past weekend, Nyla's family received the news that a new heart had been accepted for her transplant. The next day, she was placed on a bypass machine (taking over the function of her heart and lungs during surgery).
Nyla was in surgery for 12 hours, according to Nyla's Journey. She was extubated the next day, meaning the ventilatory support was removed from her body.
"I was shocked. I cried, a lot. I couldn't believe Nyla had a donor," said Jamie Pritchett, Nyla's mother. "It just doesn't feel real." Pritchett continued to focus on her disbelief and shock when she first heard that a new heart had been accepted for Nyla.
Pritchett said that Nyla will continue to have heart catheters, and biopsies, and take "a lot" of new medications. Pritchett also said that Nyla will have to live at the Ronald McDonald's House in Cincinnati for at least three months after her transplant.
Nyla will likely be in the hospital for another week or two to make sure her body does not reject the new heart, according to Pritchett.
Nyla's family has continuously expressed sincere gratitude to the donor's family and all who helped raise money for the transplant. They are excited to take Nyla home after her recovery, according to Nyla's Journey.
"I'm so thankful for the donor's family. My heart goes out to them," said Pritchett. She also said she is unable to be in contact with the donor's family for 12 months.
For more information on Nyla's condition, visit https://www.Cdc.Gov/ncbddd/heartdefects/hlhs.Html.
Parents Heartbroken After 'perfect' Baby Boy Dies
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."
© Chloe Bakewell and Alex Price Amias Nicholas Price, from Ellesmere Port, died on March 9 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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