A fit and healthy child can suddenly be diagnosed with a condition for which a transplant is the only cure.
Today AASMA DAY talks to Sam Linekar whose daughter Emily was brought back from the brink of death with a heart transplant.
AS a nurse, Sam Linekar is trained to recognise the signs of when someone is poorly.
However, it was her mother’s instinct not her medical training which first made her realise that something was wrong with her daughter Emily.
Sam, 50, who is married to drainage engineer Kevin and lives in Hoghton, near Preston, says Emily, now 16, was perfectly healthy and well as a baby and a youngster and the first signs of a problem arose when she was 12.
Sam, who also has son Jonathan, 26, recalls: “When Emily was 12, she just started swelling up in her feet and her ankles. When you pressed into the swelling, the dent would stay there. As a nurse, I knew it wasn’t right.
“I took Emily to the doctors several times but they kept telling me it was a side effect for a medication she was taking for something unrelated.
“However, despite what they were telling me, I knew something was wrong. It was my mother’s instinct that told me this - not because I was a nurse.
“I knew my daughter and I knew things were not right.
“When I took her to the fifth doctor, she was a doctor I had not met before.
“This time, I made sure I was firm and I sat in front of her and said: ‘I know you don’t know me but I am not going to move until you do something because I know something is wrong with Emily.’
“Fortunately, this doctor listened to me and spoke to a consultant and Emily was admitted to the Royal Preston Hospital the following day.”
Specialists carried out tests and after realising Emily’s pulse was high, they performed a chest X-ray which showed her heart was very enlarged.
Emily was transferred to the cardiac unit at Alder Hey Hospital where doctors removed 12 kilos of retained fluid from her.
Experts then tried to find out what was wrong with Emily’s heart and initially treated her for a rhythm problem.
They then realised Emily had a form of heart disease and she was taken to the Freeman Hospital in Newcastle where she was diagnosed with restrictive cardiomyopathy which is where the heart muscle changes or weakens so it is no longer able to fill up or pump properly.
It is a fatal condition with the only option to manage symptoms while waiting for a heart transplant.
Sam says: “Everyone was shocked when they saw the size and function of Emily’s heart.
“The reason she was swelling was because her heart was failing and she was retaining fluid.
“It was devastating as we were told that Emily could literally drop dead at any moment because her heart was in such a bad condition.
“Doctors don’t know what caused her to develop this condition. Sometimes, it can be a virus, but the majority of times, they don’t know the cause.”
Emily was almost 14 when she went on the organ donor active waiting list.
Sam remembers: “It was horrible living like that. We did not know how long Emily had or when her last day was going to be. We were just waiting and praying for that call and it dominated our every waking moment and was always on our mind.”
Things came to a head in November 2013 when Emily began swelling despite being on massive doses of water tablets and was being violently sick.
She was admitted to Newcastle where doctors discovered her heart was failing.
Sam recalls that terrible time. “Emily was in intensive care and the next morning, she just looked at me and said: ‘I don’t feel right. I feel funny’ and then her eyes rolled back in her head.
“I called for help and suddenly there were 20 people in the room and they told us Emily’s heart was stopping and she was going into cardiac arrest.
“They were trying to incubate her as quickly as possible and Emily was still lucid at this point so I was talking to her.
“She was clutching her chest and she said: ‘I love you Mum. I love you both.’
“She knew she was going and it was a terrible and emotional moment.”
Emily was sedated and put on an ECMO machine - device that does the work of the heart and lungs. She was suffering heavy internal bleeding and she was so poorly, she was given a less than five per cent chance of survival.
Sam explains: “Emily was having an inflammatory response and was basically bleeding from everywhere. As fast as they could get blood into her, it was pouring out.
“Emily was like that for two or three days and the surgeon decided to operate.
“They performed open heart surgery on the ward as Emily was so poorly, they did not want to risk moving her.
“When they opened her chest, they found three litres of blood floating around her chest cavity. They cleaned it up and gave it back to her.
“That day, Emily turned a corner and the bleeding stopped.”
Emily gradually improved and the consultant spoke to her family telling them the outlook was grim but there was always hope.
Sam says: “Doctors always look for the perfect heart for transplant - but sometimes, they look for one that is not quite perfect but it is better than dying.
“They managed to get a heart where the lady it had come from had died of a brain tumour. The tumour had pressed on the pituitary gland and affected the function of the heart.
“But doctors knew it was a good heart and had the potential to recover in Emily and work.
“We said we were happy to go ahead with this.
“The timing was perfect as up until a couple of days earlier, Emily was too ill to accept the heart.
“There were eight children on the priority waiting list for a heart at the same time as Emily but as it was an adult heart, she was the biggest child so the most suitable.”
The transplant went ahead and was a success when Emily was just 14.
As soon as her parents saw her, they knew it had worked.
Sam says: “Emily looked amazing. Her cheeks were rosy and her lips were pink. She had been pale for so long, it was astounding to see her with colour. She looked beautiful.”
Emily was in intensive care for two weeks followed by six weeks on the children’s ward before returning home.
Since then, it has been slow and steady progress.
Sam says: “Emily has got nerve damage in her leg, but other than that, she is doing amazingly and has coped with everything so well.
“She went through hell. Nobody should have to go through that, let alone a girl of 14. But Emily came out smiling. All the nurses were besotted with her and the care she received from doctors and nursing staff was phenomenal.
“Emily was at St Bede’s School in Blackburn and then transferred to St Thomas’ Centre in Blackburn which has a medical centre for vulnerable children.
“Despite missing the last two years of her education, Emily still passed her GCSEs.We are extremely proud of her.”
All Emily’s family know about her donor is that she was a woman in her 30s who died of a brain tumour.
Sam says: “We like to think this lady made the decision that she wanted to donate while she was alive.It must have been very hard for her family to make this decision and we are so grateful to them.
“I will never have the words to thank our donor family enough.
“I have written to them. But how on earth can you put into words what it feels like to have your daughter’s life saved?
“I cannot stress enough how important it is for people to sign up on the organ donor register, but more importantly, to tell their family and loved ones their wishes because if they don’t know, they can stop it happening.”
Giving the gift of life is a campaign aiming to inspire at least another 2,016 people to pledge to donate their organs during 2016.
To register as an organ donor, visit: http://bit.ly/givethegiftoflife
But more importantly, tell those closest to you that you would like to become an organ donor and then record your wishes on the donor register.
That way, when the time comes, your family and friends will know you want to be a donor to help others.
Alternatively, fill in and post back this donation form