Two sides of organ donation: Meet Ben and Sarah

A beautiful and creative music project will soon bring 20 organ donors’ families and 10 organ recipients together to celebrate the “unintentional heroes” whose organs have brought life to others. More on that below. First, let’s meet Ben and Sarah.

BEN'S STORY:

Little Ben Canty, aged six, died on October 16, after a number of seizures.

Just three days earlier, his parents Bryan and Elma had been told Ben would need a liver transplant. His liver improved afterwards and the operation never happened, but the possibility of transplant made a deep impression on his parents.

“When they told us there was no chance (for Ben), and mentioned organ donation, how could we say no?” said Bryan. “Ben was in that position himself just three days before.”

Ben had been diagnosed at the age of three with three tumours (Cavernomas) on his brain, which caused him to suffer two strokes at the ages of three and four.

“The first stroke did a lot of damage to his left side - his hand and ankle were affected,” Bryan told us. “The second stroke wasn’t as severe.”

After the first stroke in particular, intensive physiotherapy and daily exercises (which Bryan and Elma turned into games) brought about a huge improvement in Ben.

“Ben recovered 100% from both strokes,” said Bryan.

“Playing was his thing. He’d spend hours outside with the other kids, making up games. He was outside in good and bad weather. He liked a bit of telly and DS too, but playing games with the kids outside was his main thing.

“He loved Superman, Spiderman, the Power Rangers and Skylanders, and used to plan battles between them all.”

“You could make him laugh so easily,” recalls Bryan. “I have videos from when he was small, and he’s laughing in every one of them.”

Ben, on a family holiday in Lanzarote

Bryan told us Ben had been outside, climbing trees near the family home in Carrigaline, Co Cork, on the evening of his final seizure.

“We had two and a half years of bliss, and then he suffered a seizure that basically never stopped,” he said.

He and Elma buried a Skylander figure with Ben last October, and dressed him in his Carrigaline GAA gear for the funeral.

When he suffered the seizure on October 7 last, doctors put Ben in an induced coma for eight days. On October 15, they delivered the dreadful news to his parents that there was no hope he would survive. As transplant had been a possibility for Ben, the family had travelled to England for Ben's final care, and his organs were donated there.

Bryan describes the moment incredibly movingly in a blog post:

“When the neurologist came back to the ward, he passed us and went to the head of the department. I saw him touching the back of his head and then shaking it and I knew then that our world had fallen apart. He came back to us, closed the curtains and told us there was no hope. That Ben was clinically brain- dead and the ventilator was keeping him alive.

“I will never forget that moment as myself and Elma collapsed onto the bed and hugged him as tightly as we could.”

“They kept him alive for 24 more hours to match the organs,” Bryan told us. “We hadn’t been able to touch him or hold him up to that point (while they had him sedated and were trying to keep him stabilised), but we got to hold him during that last night. They put him in our arms, and he died.”

From his blog post:

“My wife slept with Ben that night in the hospital bed as he had slept in our bed every night for the previous six years. The next day, Ben was taken to the hospital theatre. In a room just outside, he was placed in our arms with his favourite teddy Elmo and they removed the ventilator while we sang his favourite song, Hush Little Baby.

“After about 2 minutes my wife told me to look at his lips, they were turning blue. After about 4 minutes we had to let our little darling go and he was brought into the theatre so that he could help other children.”

Bryan said it would not have been possible to tell afterwards from Ben’s body that he had donated his organs. “There’s just a plaster from the neck down,” he said.

“Ben has helped five people so far. I want to shout to the world what Ben has done…Just last week, they notified us that someone had received his heart valve.”

Bryan will attend the Bantry event (below) on May 24 with his 11-year-old daughter Becky, and is looking forward to talking with other families whose loved ones also donated organs.

He says he expects the fact that Ben helped so many others through organ donation “will eventually help” his family come to terms with their loss.

“Right now though, I’d prefer Ben to still be running around,” he said.

SARAH'S STORY:

Sarah Jordan was a happy, healthy 24-year-old when she fell ill with a bad flu. She started to feel cold and tired all the time, and noticed a swelling in her ankles and legs.

A round of antibiotics didn’t help, and Sarah went for a second opinion.

“The doctor referred me to A and E and, after a lot of tests, they said I was at the start of heart failure,” Sarah told us. That was in 2011.

It was a huge shock. Sarah had never smoked and had been a sporty girl, involved in athletics and camogie up to the age of 17. Even as an adult, she kept herself fit with walking and running. Her grandmother had had a heart attack years before, but had fully recovered. There was no other history of heart disease in the family at the time of Sarah’s diagnosis.

After two months in hospital undergoing many tests, including heart biopsies where samples of her heart were sent for analysis, Sarah learned a virus had attacked her heart, reducing its function to just 26%. “It was kinda scary,” she agrees.

“We all thought how could it happen to me - I was so healthy - but I just got unlucky.”

Sarah was fitted with a cardiac device - a pacemaker and defibrillator in one - to control the function of her heart.

In June that year, after months of medical shocks herself, Sarah’s father passed away after a heart attack.

“Between that June and Christmas, my health deteriorated again,” said Sarah. By early February 2012, Sarah’s heart function was down to 16% and she was back in hospital and on a drip.

Her doctors started talking about the necessity for a transplant and, because Sarah was a critical case, her name was added to the waiting list after four days, a process that can take three weeks for less critical cases.

As it happened, Sarah’s father had previously had a kidney transplant, so she and her family (mum Mary and brothers Killian, Ronan and Gary) were familiar to an extent with the processes involved.

Sarah endured the highs and lows of three separate calls within 10 weeks to say a heart was available for her. In the first two cases, the donor organ was found to not be a match. On the third call though, the transplant went ahead.

“It’s a very mixed experience when you get that call,” Sarah said. “You’re excited and nervous, but you think of the donor family too and what they’re going through.”

She found the third occasion “terrifying” but, after a six-hour operation, Sarah had a new heart.

“I had been cold for so long. When I woke up, I could actually feel the heat in the blood going round my body. It was unbelievable,” she said.

After about three months, Sarah, who lives in Ringaskiddy in Cork, was able to drive and socialise. Now, she has completed a college course in administration and will soon be looking for work.

The post-transplant highlight for her so far though, was her first 5km run one year after the transplant.

“When I was sick, I wasn’t able to walk far, or wash my hair or sleep upstairs. You struggle to breathe. After about 40 metres walking, I’d have to rest.

“When I was in hospital, I decided that as soon as I could, I’d start running again.”

Sarah pictured at her fist post-transplant 5km run with mum Mary

Sarah thinks about her donor and his or her family every day and has written a letter to them via the transplant services. She knows nothing about them, but likes that she has been able to acknowledge what was done for her.

“Only for that person, I don’t know where I’d be. I know now I need to enjoy life and honour my donor’s gift of life...I do the best I can to live their life for them.”

Sarah will join the families and organ recipients in Bantry on May 24 (below).

Unintentional hero

Pa Curran is a teacher of PE and Geography in Banty, Co Cork.

Last October, one of his best friends, Taidhg Burke Neff, was killed after a car accident. He spent three days in hospital before he passed away from his injuries.

Pa wrote a song called Unintentional Hero in tribute to Taidgh, which Taidgh’s parents asked him to play at the funeral.

Taidgh’s organs were donated. “He’d had a conversation with his mother just a few weeks before, saying that if anything happened to him, he wanted his organs donated,” said Pa.

Tragically, Pa attended another friend’s funeral just three weeks later. Fellow PE teacher based in Limerick Alan Feely, an old college friend of Pa’s, collapsed suddenly at a gym in Limerick and died two days later. He had suffered a bleed to the brain.

Pa says he had “a strong sense of deja vu” at Alan’s funeral. “They were talking again about organ donation, and how Alan (had donated his organs and) was a hero,” he said.

Pa decided to raise awareness for this urgent cause, given the massive need for organs and the relatively tiny number of donations*. An idea soon started to form to use music and video to get the message across.

Pa decided to bring together a number of people experiencing the incredible, life-giving effects of donation and 20 families of organ donors (the “unintentional heros”) who gave a chance to those in need of organs.

“(Our video) will start with 10 people who have received organs,” he told breakingnews.ie. “The first five will say ‘I’m alive’ and the sixth will say “because someone decided to donate organs”.

The remaining four will simply say their donor is their hero.

The rest of the music video will show families of organ donors holding pictures of their loved ones while ‘Unintentional Hero’ plays out.

“There are children, mams, dads and grandparents taking part,” said Pa, who added there’s a cast of about 80 people lined up for the video - none of them actors.

“It’s all real people, really affected in some direct way by organ donation,” he said.

After an interview on the Ray D’Arcy show to explain the idea, Pa received emails from many families who had been affected.

Acknowledging the emotional impact of their stories, Pa said he had travelled to the US shortly after the Today FM video, and picked up the donor families’ emails while he was there.

“I was sitting in a Starbucks in New York reading the emails,” he recalls. “Luckily, in New York, I didn’t look out of place sobbing into a laptop. The stories are so emotional and hard, even now, to talk about.”

The families will meet in Bantry in west Cork on Saturday, May 24 to shoot the video.

Here’s Pa singing Unintentional Hero, written for Taidhg but applicable to many:

Pa set up a facebook page a few days ago, which features organ donors’ stories. If you would like to add your family’s story to the page, you can contact Pa on patjcurran@hotmail.com.

Once the single Unintentional Hero is recorded and edited, it will be on sale in shops and available for download. Proceeds go to the Irish Kidney Association and the Strange Boat Donor Foundation, which supports donor families and organ recipients.

"We just want to get that message out about the importance of organ donation," said Pa. "If it inspires just one more person to carry a card, it would be worth it."

* There were 86 donors last year, who donated a total of 256 organs (source: Irish Kidney Association).

There are 600 people waiting for life-saving transplants at any one time in Ireland, about 500 of them for kidneys and the rest for a heart, lung, liver or pancreas.

More about organ donation here.

 

By Jill O'Sullivan

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