Parents of desperately ill kids tell of relief after organ donations

This New Year, millions of us pledged — yet again — to go to the gym more, lose weight or finally take up that exciting hobby. But think how much more of a difference we could make if, instead of focusing on ourselves, we resolved to help others.

And there’s one thing we can all do that requires barely any effort, yet could change someone’s life for ever: sign up to become an organ donor.

Last year, the Commons passed a bill that would introduce an ‘opt-out’ donation system that means every adult in England will automatically be considered an organ donor unless they have registered their decision not to.

But with the so-called ‘Max’s Law’, named after ten-year-old campaigner Max Johnson, still working its way through the Lords, it is not likely to come into effect until 2020.

So this year, why not choose to ‘opt-in’? You could save countless lives — including those of very young children. And, heartbreaking as it may seem, children can also be organ donors.

‘For many children, their only hope is to receive an organ from another child who has died and consent rates from parents are historically lower,’ says a spokesman for the NHS Blood and Transplant service. ‘Losing a child is a terrible tragedy but when a parent does agree to donate, we find they get immense comfortf rom the fact that their loss has helped other children to live.’

There are currently 165 children on the organ transplant waiting list. Here, JILL FOSTER, speaks to six families whose little ones have benefited from the most extraordinarily selfless gift of all . . .

Ella Wiseman, pictured, had a nine-hour heart operation just before her second birthday

Ella Wiseman, pictured, had a nine-hour heart operation just before her second birthday

Ella Wiseman, pictured, had a nine-hour heart operation just before her second birthday

PARENT’S GAVE THEIR BABY’S HEART SO ELLA COULD LIVE  

Ella Wiseman, two, lives with her full-time mum Amy, 22, in Douglas on the Isle of Man. 

Amy says: When Ella became ill with a chest infection at 11 months old, I took her to our GP who prescribed antibiotics. But later she refused to eat, was breathing rapidly and started vomiting. I called an ambulance and at the hospital, X-rays showed she had a problem with her heart. She looked so small and vulnerable. She was transferred her to Alder Hey Children’s Hospital and we were told that the main chamber of her heart was enlarged and weakened. I was terrified

After a month of monitoring, we were sent home, but over time she deteriorated.

Another hospital visit showed her heart couldn’t be repaired and she was reliant on a machine to pump blood around her body and she needed a transplant.

Her mother Amy said: 'I’ll always be so grateful to the family who made that decision to donate their own baby’s heart so mine could live'

Her mother Amy said: 'I’ll always be so grateful to the family who made that decision to donate their own baby’s heart so mine could live'

Her mother Amy said: ‘I’ll always be so grateful to the family who made that decision to donate their own baby’s heart so mine could live’

As we were so far from home, the charity The Sick Children’s Trust provided a free room in a ‘Home From Home’ Scott House, minutes away from the hospital, for which I’ll always be grateful. We had no idea we’d be there for six months.

You can’t begin to understand the thoughts that go through your mind. I knew a baby needed to lose its life to save my daughter.

Then just before Ella’s second birthday we got the call to say there was a heart. We were ecstatic but terrified. The nine-hour operation was a success and she is now a completely different child, chatty, lively and very cheeky. As donors are anonymous, all I know is he was a two-year-old boy. I’ve written to his family to say thank you and sent pictures through the organ donation service. I’ll always be so grateful to the family who made that decision to donate their own baby’s heart so mine could live.

I FELT SUCH GRIEF FOR THE DONOR’S FAMILY

Luna Lisle, 22 months, lives with her teacher mother Isobel, 39, and father Andrew, 42, a carpenter, in Sevenoaks. 

Isobel says: When Luna was born she had neo-natal jaundice and a slight temperature but we thought everything was fine. However, after a few days at home, I knew something was wrong.

Hospital tests confirmed she had biliary atresia — a rare disease of the liver and bile ducts — and she’d need a seven-hour operation. Seeing her come out of surgery was one of the hardest moments of my life.

She was very swollen and covered in tubes. I remember weeping. We were told she would need a liver transplant at some point. A few months later, scans showed her liver had stopped functioning properly.

Luna Lisle was given a new liver last year. Her mother, Isobel Hohler, said: 'Although I was thrilled, I felt a gut punch of grief for the family who had lost their loved one'

Luna Lisle was given a new liver last year. Her mother, Isobel Hohler, said: 'Although I was thrilled, I felt a gut punch of grief for the family who had lost their loved one'

Luna Lisle was given a new liver last year. Her mother, Isobel Hohler, said: ‘Although I was thrilled, I felt a gut punch of grief for the family who had lost their loved one’

When it finally happened, she was in surgery for around six hours and afterwards you could see the jaundice draining from her skin. Although I was thrilled, I felt a gut punch of grief for the family who had lost their loved one.

We think it was a little girl, and I’m getting ready to write to the family to thank them for making such an incredible decision when they were consumed by grief. Luna is doing wonderfully well. 

She’s on anti-rejection medication and possibly always will be. We will teach her to respect her life and the chances she has been given thanks to another family’s bravery.

Roman Williams, who lives in Fishburn, Co,. Durham, got a new heart in December 2015

Roman Williams, who lives in Fishburn, Co,. Durham, got a new heart in December 2015

Roman Williams, who lives in Fishburn, Co,. Durham, got a new heart in December 2015

KNOWING A CHILD MUST DIE IS SO HARD

Roman Williams, three, lives with his mother Zoe, 28, and father Craig, 34, who works in a power station in Fishburn, Co,. Durham. Roman has a twin brother Hunter and baby brother Colt. 

Zoe says: We found out something was wrong with Roman at my 20-week scan and were offered a termination. But if we had gone ahead, it would have put Hunter at risk, too. So we carried on, praying Roman would be all right.

As soon as he was born he was put on life support. He had a blockage from the heart to the lungs and underwent 16 operations. Waiting for the day he’d get a new heart became a normal part of life.

We saw nine other children undergo heart transplants while we were in the hospital and at one point I thought we’d run out of time.

His mother, Zoe Pickering, said: ‘Following the transplant I wrote to the family and then they wrote back, telling me about the child who had donated. I can’t say much about them as they don’t want to be identified but it was very emotional for me to hear their story and put a name to the child whose heart is inside Roman’

But knowing a child has to die for your child to live is very hard. He had the transplant in December 2015 and when he came out of surgery we were very worried because he wasn’t responding to anything. The doctors thought he’d suffered brain damage. We were in despair.

But when we mentioned Hunter’s name — his twin — there were suddenly readings on the monitors. Just hearing his brother’s name had got the response the doctors had been waiting for and he hadn’t suffered brain damage after all.

Following the transplant I wrote to the family and then they wrote back, telling me about the child who had donated.

I can’t say much about them as they don’t want to be identified but it was very emotional for me to hear their story and put a name to the child whose heart is inside Roman.

Caleb Williams, from Catterick, had a rare heart condition and needed a transplant. He spent his first 463 days in hospital

Caleb Williams, from Catterick, had a rare heart condition and needed a transplant. He spent his first 463 days in hospital

Caleb Williams, from Catterick, had a rare heart condition and needed a transplant. He spent his first 463 days in hospital

I FELT SAD THINKING ABOUT THEIR PAIN

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Caleb Williams, three, lives with mum Claire, 39, and dad Anthony, 38, a Royal Mechanical Engineer in Catterick. Caleb has four siblings. 

Claire says: When we discovered at 20 weeks that Caleb had a rare heart condition, where the left side of his heart didn’t work at all, the doctors asked us to consider termination. But I could already feel him kicking and knew that he would be a fighter.

Four days after he was born he had an operation to strengthen his heart but the surgeons soon realised he was too weak to undergo any more. A transplant was our only option.

He spent the first 463 days of his life in hospital and Anthony and I made sure he was never there alone. We would take turns and live in the hospital for three or four days each at a time.

His mother, Claire, said: 'Someone somewhere was going through the worst pain imaginable and although I felt so sad for them, I also felt happy for Caleb'

His mother, Claire, said: 'Someone somewhere was going through the worst pain imaginable and although I felt so sad for them, I also felt happy for Caleb'

His mother, Claire, said: ‘Someone somewhere was going through the worst pain imaginable and although I felt so sad for them, I also felt happy for Caleb’

He was put on the donor list in December 2015 and five months later got the call to say a heart was available. All I knew was that it was from a youngster who was around the same age as my daughter at the time and that really brought it home.

Someone somewhere was going through the worst pain imaginable and although I felt so sad for them, I also felt happy for Caleb. He was getting a second chance. On May 10 2016, after nine hours, he came out of transplant surgery and spent a week on intensive care. He almost instantly got colour back in his cheeks and lips.

Six months later, in October 2016 he came home and now he’s coming on leaps and bounds.

We wrote a thank you card to the donor’s family but never heard anything else, which is fine. I just hope they know that our little boy is alive because of them.

Evie Latewood, who lives in Portadown, County Armagh, needed a liver transplant because her bile ducts and gall bladder had not formed properly

Evie Latewood, who lives in Portadown, County Armagh, needed a liver transplant because her bile ducts and gall bladder had not formed properly

Evie Latewood, who lives in Portadown, County Armagh, needed a liver transplant because her bile ducts and gall bladder had not formed properly

AT EVERY MILESTONE, WE ARE GRATEFUL

Evie Latewood is 18 months old. She lives with parents Nathalie, 25, a full-time mother, father Dyllan, 26, a design engineer, twin sister Katie and older brother Eli, three in Portadown. 

Nathalie says: Evie was born seemingly healthy but after five days we noticed her stools were the wrong colour.

Three weeks later, it was suspected she may have biliary atresia — her bile ducts and gall bladder had not formed properly. She baffled consultants because she seemed so healthy.

At six weeks old she was given a Kasai procedure to connect her liver to her intestine, which would buy her more time with her natural liver. It’s so scary holding your tiny baby as she’s given an anaesthetic and goes floppy in your arms. The operation was successful and, for a while, we were able to get on with ‘normal’ life.

But late last year, her tummy started swelling with fluid and we were in and out of hospital again. One night, she started vomiting blood. I was terrified.

The blood just kept coming and I thought we were going to lose her.

Her mother, Nathalie, said: 'That whole day I prayed for that poor family — their pain and sorrow was going to be our joy and the start of Evie’s new life. It’s bittersweet'

Her mother, Nathalie, said: 'That whole day I prayed for that poor family — their pain and sorrow was going to be our joy and the start of Evie’s new life. It’s bittersweet'

Her mother, Nathalie, said: ‘That whole day I prayed for that poor family — their pain and sorrow was going to be our joy and the start of Evie’s new life. It’s bittersweet’

An air ambulance flew us to Birmingham and she was admitted to the liver ward where they stabilised her and gave her medicines. It was at this point we knew it was likely she’d need a transplant.

She was put on the transplant list at 4.17pm on February 5 last year. Incredibly, only 14 hours later at 6.17am, we got the call to say a liver was available. The fact someone had to die for Evie to get that liver is the first thing you think about.

That whole day I prayed for that poor family — their pain and sorrow was going to be our joy and the start of Evie’s new life. It’s bittersweet.

We dreaded taking Evie down to theatre but after six hours in surgery, she was out. All we know about Evie’s donor is that she was a female in her 30s. She could have been someone’s mum, someone’s wife, definitely someone’s daughter.

But every time Evie smiles or reaches a milestone, that incredible lady — our hero — is with us every step of the way. We are so grateful not only to her, but to her family for their precious gift. We’ve written to them and sent them photographs so hopefully Evie’s story gives them some comfort.

Ethan Davies, from Bicester, needed a new kidney after it was damaged in the womb by a blockage in his bowel

Ethan Davies, from Bicester, needed a new kidney after it was damaged in the womb by a blockage in his bowel

Ethan Davies, from Bicester, needed a new kidney after it was damaged in the womb by a blockage in his bowel

A COMPLETE STRANGER SAVED OUR BOY’S LIFE

Ethan Davies is two. He lives with mum Nicola, 36, father James, 43, both police officers near Bicester. He has two half-brothers and two sisters. 

Nicola says: At our 20 week scan with Ethan, it was revealed there was a blockage in his bowel that enlarged his bladder and damaged his kidneys. Doctors thought he wouldn’t survive beyond birth.

But we found an expert who was able to operate. He put a shunt in Ethan’s bladder while still in my womb and Ethan managed to keep it in for three weeks.

However his kidney was deteriorating and he’d picked up an infection after a second operation so the decision was made to deliver him at 28 weeks. He was very poorly and too little to start dialysis. At three months old he was moved to Great Ormond Street Hospital.

At four months old he needed to be operated on again but the operation led to infection and his kidneys completely failed.

His mother, Nicola, pictured with husband James, revealed 150 people offered to be tested after she turned to Facebook - 90 per cent of who she didn't know

His mother, Nicola, pictured with husband James, revealed 150 people offered to be tested after she turned to Facebook - 90 per cent of who she didn't know

His mother, Nicola, pictured with husband James, revealed 150 people offered to be tested after she turned to Facebook – 90 per cent of who she didn’t know

With children so young, the parents are the first port of call when it comes to donors. I was a match for a blood type but it turned out my kidneys only function at 70 per cent. Meanwhile my husband suffered from kidney stones so neither of us could donate.

We turned to Facebook to see if family and friends could help. People started sharing our plea and, incredibly, 150 people offered to be tested. Ninety per cent were people we didn’t know. One of them was a lady called Katrina. She wanted to help and it turned out she was a really good match.

Ethan was operated on at the beginning of June. Although he’d had other operations, this was the most nerve-racking of all. Time went very slowly over those seven hours and he was ventilated for the first 18 hours afterwards. Now he’s doing really well. He didn’t have the muscle strength to even attempt to walk before his operation but now he’s close to taking his first steps.

WHAT KATRINA HAS DONE FOR OUR LITTLE BOY IS SELFLESS  

Katrina Roberts, 24, from Sussex is a call handler for the ambulance service.

She says: ‘My partner is a police officer like James and Nicola and I feel very much a part of the police ‘family’, so when I found out they needed help, it felt like the right thing to do.

One of my little nephews shares a birthday with Ethan and so his story really connected with me. I was only too happy to help and I’m recovering well. I’ve got no regrets.

The Sick Children’s Trust visit:www.sickchildrenstrust.org 

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