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A mother made a desperate call for a heart for her poor son, who probably would not be going to his second birthday without a new one.
Grayson Heagren, 13 months old, was diagnosed with dilated cardiomyopathy at two months.
The young man from Peterborough, Cambridgeshire, was last year's cardiac transplant list last year with only 14% cardiac function.
Her mother, Shannon Heagren, was told that he would probably not live beyond two years because the pressure on his heart would only worsen with aging.
The disease, for which there is no cure, causes the enlargement of one side of the heart, making it stretched and weak and unable to pump blood efficiently.
Grayson is often in the hospital to fight infections because his other organs are under pressure – meaning his family lives in constant fear of heart failure at any time.
Ms. Heagren, 24, said that her son, "the time bomb", was still smiling, while he had no energy and that he was fed by a tube .
Grayson Heagren, 13 months old, is waiting for a new heart after being diagnosed with dilated cardiomyopathy at two months old.
Shannon Heagren, a 24-year-old full-time mother, learned that her son would probably not live more than two years because of the tension in his heart as he grew up
Heagren said her son, "ticking bomb," smiled despite lack of energy
When Grayson was diagnosed with dilated cardiomyopathy at the age of just eight weeks, he had to spend four months in the hospital.
Heagren, a mother of four, said, "We do not know how long he will manage without a new heart. They told us that it was unlikely that he would reach his second birthday.
"It's a race against the clock. It's a time bomb, because we do not know how long it will take and in that time, his heart may get worse.
& # 39; It will not have a future without a new heart. But as he is a fighter, we treat each day as a new day.
"I live in the hope that a heart will be found. I have to do it for my children, but I find it very difficult to keep that hope.
"I like to believe that it will happen, but the truth is that I do not know it. I just know that I can not give up.
After Grayson's birth, Ms. Heagren stated that she immediately noticed that something was wrong because he was breathing quickly, could not keep the milk at the bottom and was taking a lot of time to feed himself.
He was first hospitalized for a week and put on antibiotics for an infection.
But after being taken to Glenfield Hospital in Leicester for cardiac testing, Grayson was diagnosed with dilated cardiomyopathy (DCM) at two months old.
DCM causes stretching and weakening of the main pumping chamber of the heart, the left ventricle, thus preventing blood from circulating effectively around the body.
The inherited DCM is caused by a change or mutation of one or more genes. If you have DCM, your child will inherit the disease on 50%.
But it can also be caused by viral infections, uncontrolled hypertension and excessive amounts of alcohol.
According to the Mayo Clinic, this condition affects people of all ages, including infants and children, but mostly affects men between the ages of 20 and 50 years.
The doctors revealed that Grayson's heart function was 14% and he was hospitalized for four months, including two in intensive care.
Ms. Heagren said, "When he was brought in, they said it was life or death and if I had left it longer, he would not have done it.
"At one point, they had to put a line in his vein to give him medicine and they did not know if his heart would be able to cope with the situation or he would stop immediately.
"They told us we should get ready to say goodbye, so I called my family and they came to his bedside.
Fortunately, Grayson got away with it, but it was the beginning of a difficult journey.
Ms. Heagren said that she lived in the hope that her son "fighter" would have a new heart. Pictured at their home in Peterborough, Cambridgeshire
When Grayson was in the hospital as a baby after the diagnosis, his family was asked to prepare to say goodbye because of his weakness
The doctors revealed that Grayson's heart function was at 14% and that he spent the next four months in the hospital, including two in intensive care (photo).
Ms. Heagren said, "When he was brought in, they said it was life or death and if I had left him longer, he would not have done it". On the picture at the hospital
Ms. Heagren said she spent four months crying while Grayson was in the hospital.
Ms. Heagren said, "These four months have been horrible. I just spent all my time crying, I was hysterical.
I could not eat or sleep. I just did not know what was going to happen.
Grayson's heart function still only works at 14%, which puts pressure on its other organs.
He is unable to eat solid foods, so he must be fed by a probe and takes ten different drugs so that his heart does not deteriorate.
Ms. Heagren must also keep him as calm as possible to try to minimize the tensions on his heart. He frequently suffers from chest infections, pneumonia and bronchitis.
Ms. Heagren, who has three other children, seven-year-old Amelia, four-year-old Aiden and two-year-old Riley, said, "Because his heart is so weak, he falls ill very quickly.
"Whenever he goes to the hospital, we do not know if he'll get out again."
Grayson, photographed at home, has been waiting for an appropriate donor since Christmas 2018
Ms. Heagren should keep Grayson as calm as possible to try to minimize the tension on her heart.
"You do not stop doing things, but you have to try to keep it calm so that it does not get tired.
"It does not have energy and spends a good part of the day sleeping.
"But he's a fighter and he's been very successful. Of course, he gets sick, but he always has a smile on his face and likes to play.
Grayson has been on the list of heart transplants on Christmas Eve 2018, but until now no adequate organs have been found.
According to NHS figures, 280 people, including 29 children, were waiting for a heart transplant in August of last year.
Heagren said, "We do not know how long it will take to get one. The hearts go to the one who needs it most.
"We can receive a call at any time and we must be ready to leave.
"I have my phone with me all the time in case it would be them and we would not even be allowed out of the country in case we get the call.
"It's horrible to think about what the donor's parents will experience and have to make the decision after losing a child if he has to give their organs."
Currently, organ donation laws are different in England, Wales, Scotland and Northern Ireland.
Grayson is unable to eat solid foods. It must therefore be powered by a tube. He takes ten different medicines (some illustrated) so that his heart does not deteriorate.
Mrs. Heagren, photographed with Grayson at home, said, "I want to see my boy grow up and go to school. I want him to live a normal and happy life & # 39;
About 500,000 people die each year in the UK, but about one in every 100 die in circumstances where they are able to donate their organs.
Starting in the spring of 2020, all adults in England will be considered to have agreed to be organ donors when they die, unless they have recorded their decision to not to participate in the process to reduce the number of pending deaths on the donor list.
Some groups are excluded from the opt-out system. The situation will not change for children under 18, in which case the family is asked to make their decision.
Ms. Heagren said, "Few people can imagine having to give up the heart of their child.
"Before, I would not have given my kids, but now they are all registered for a donation of organs.
"I think it's so important that it helps somebody else to live. I find it comforting to know that your child has helped save someone else – and in a way that lives it.
"I want to see my boy grow up and go to school. I want him to live a normal and happy life.
"But for the moment, we take each day as it comes. We never know what tomorrow will bring but we try to see each day as a new day. & # 39;
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