The gift of organ donation

Tthe Wrafters, a dairy farming family from Tullamore, have faced huge medical challenges in the past five years, but they have done so valiantly. The challenges involved a kidney transplant for their nine-year-old son, Gearoid, and a kidney removal operation for his older sister, Ciara.

Mum, Theresa, talks about what they’ve been through and why she believes carrying an organ donor card is important for us all.

“I’m doing this interview in thanksgiving,” Theresa Wrafter says.

“We will never forget Gearoid’s donor family. Gearoid is nearly two years over his transplant now. Because of that family’s generosity, we have our little boy today.”

Theresa says there is huge joy around Gearoid’s recovery, but there is also sadness knowing that a family somewhere in Ireland lost a loved one in order for this to happen.

“But what they’ve done – if they could only realise what it means to us. The gift.”

Gearoid is now nine, the youngest of four children, and loves his bike, tractors and farming. However, before his transplant he was very unwell for a long time.

His mum describes the situation: “Looking back, Gearoid was sick for several years but we didn’t know what was wrong with him. Kidney reflux disease* wasn’t diagnosed until he was nearly six. From the age of five he complained of headaches. Because his older brother had migraines as a child, we thought that’s what Gearoid had too, so he was treated for that. But the headaches got worse over time.

He’d get a bad one and vomit and then he’d be better for a while. Now we know it was because his blood pressure was very high due to the kidney disease, but we didn’t know that then.

Over the months coming up to his sixth birthday, it got to the point where he was having these bad headaches every 10 days.

Doctors we saw believed he had tonsilitis so we had his tonsils taken out in a private hospital, but it made no difference. The headache was back a week later and I took him back to Mullingar Hospital as I was so worried about him.

A nurse took his blood pressure then and it was 270/150 – out of all proportion (the norm is 120/70). He was so ill. Carrying him around I could feel his heart jumping in his chest. They knew what to look for then – raised creatine and urea levels. His creatine levels were at 350. A normal child’s level should be around 50.”

Hard to accept the diagnosis

Theresa says that it was very hard to accept the diagnosis of kidney disease.

“Even though my sister Carmel (who was featured on the Irish Country Living health page in the past) had a transplant and was sick for a term or so before her diagnosis as a teenager, I never associated my little lad with having the same condition. It was difficult to hear it to be honest, to look at your child who is sick and feel that you’re condemned to a lifetime of worry.”

That night in July 2010 was a traumatic one for the Wrafters, particularly for Theresa as she accompanied Gearoid by ambulance from Mullingar Hospital to Our Lady’s Children’s Hospital in Crumlin.

“Kevin had to stay with the other kids so I was on my own waiting in a room at 3.30am while Gearoid was looked after. The doctors had to bring down his blood pressure slowly as it would have been dangerous to do it too quickly.”

The gravity of the situation was explained to her that night.

“I can still clearly remember it – the consultant getting down on her hunkers and explaining to me that Gearoid’s kidneys were only functioning at 15% and that she hoped to be able to prescribe medication to keep Gearoid going until he needed a transplant. Two years, she said, we would get from that day.”

It was a lot of information for Theresa to take in, but the next day she and her husband Kevin felt more positive after talking to the doctor together.

“She was very positive about the transplant and how long Gearoid would get out of it, so that helped. Although the worry kind of consumes you, especially when you’ve had a family member who’s been through it already and you know what they’ve been through.”

Looking back, however, Theresa knows that Gearoid’s treatment was planned meticulously.

“Diet was very important,” she says. “The amount of protein he ate had to be restricted and it was a constant battle to keep urea levels right. He had check-ups once a month to keep us on the straight and narrow.

“We kept going like that for two years. He went to school when he was able and I did some home schooling with him too and his teacher was great. He’s a very smart kid.”

The call

In early 2012 the Wrafters were told that Gearoid’s creatine levels were very high and that he would have to go on to the transplant list.

“It was a daunting thing for us, but the Temple Street consultant was really positive about the whole thing. In the end, Gearoid was only a few months waiting.

“The call came at 2am one morning and we had to get him out of bed and up to the hospital where the bloods and the match tests were done. He had the transplant at 7.30am.

“Going down the corridor with him to the theatre, the doctor said to me: “Don’t worry, he’ll be out playing football in no time.”

“I remember saying: ‘There was never a Wrafter played football in their lives, but they love farming.’”

Gearoid was in hospital for 10 days and attended check-ups frequently during the following seven weeks.

“That’s almost two years ago now and Gearoid has gained weight and is full of energy. He was so brave throughout the whole thing.

“He never cried in spite of having so many tubes and needles in his body and he never pulled anything out. He’s just a fantastic lad.”

Another challenge

However, in the midst of Gearoid’s illness, the Wrafter family had another challenge to meet.

Because of his diagnosis, Gearoid’s consultant recommended that all his siblings be tested to see if they had VUR (versicoureteral reflux).

“I was a carrier and had a one-in-two chance of passing this on to my family,” Theresa says. It was hard to hear that I had passed it on.”

Following Ciara’s scan, which showed one smaller than normal kidney, the consultant recommended that this kidney be removed in order to prevent further damage and blood pressure problems for Ciara.

Ciara’s operation

“Ciara’s operation was done in Crumlin Hospital just before Gearoid was put on the transplant list.

“It was very traumatic for her. She was very sore after the operation because of the way they had to do the operation. Gearoid’s transplant operation was actually easier because it wasn’t as painful to recover from.

“Being told on the same day we were taking Ciara home that Gearoid would need to be on the transplant list was a difficult experience. Just coming out of one child’s operation and having to face into another – it was a tough time for us all.”

Theresa found it difficult all the way through Gearoid’s illness that doctors went into such detail about everything.

“I know they have to tell you the risks and all, but it’s very hard getting all that information. You mull over it so much, but maybe they have to do it to keep you focused.”

For the Wrafters, the transplant clinic in Temple Street is now a happy place to go.

“You value your own health when you are in a place like that. You see little babies with kidney failure. At least Gearoid got to grow that bit more before it got bad for him.”

Nearly two years on, Gearoid and Ciara are doing well, as is their aunt Carmel since her transplant.

“We’re relieved that the operations are over and there is a lot to be thankful for, though it is hard not to worry sometimes. In relation to organ donor cards, I would ask everyone to consider carrying them. You don’t know the difference you can make to other families – it is the gift of life.”

*Kidney reflux disease or reflux nephropathy is a condition in which the kidneys are damaged by the backward flow of urine into the kidney. Over time, the kidneys may be damaged or scarred because of this VUR (vesicoureteral reflux).