Friday, 27 April 2012

Factual Storytelling Exercise: "Invisible Scars"


Gabrielle was pretty busy the day I caught up with her. My sister was preparing for a day out with a friend, and only has ten minutes to talk with me. While our meeting is brief, she has more time to do anything she wants than she may have had if not for the life-saving touch of a surgeon almost twenty years ago.

When my mother, Cassandra, found out she was pregnant for the second time, she was looking forward to the new addition to her family, as was her husband Ron. “I was having a quite normal pregnancy until I had my scan at 26 weeks gestation, which was a routine scan,” she said. “During the procedure, the radiologist stopped and said ‘Oh, I just need to go and get a doctor,’ and that’s when I thought maybe there’s something not right.”

The doctor came back and told her that she would need to see her GP as soon as possible to book a specialist, as her baby had a large cystic kidney which would require surgery.

“I started panicking… because I was nursing at that stage, coming from a medical background, I probably looked at it a bit differently to how other people would, knowing that there are a lot of things that we can do these days with surgical procedures.” Despite this, there was little Cassandra knew about the condition as it was extremely rare. She had to travel from the small desert city of Broken Hill to Adelaide, the nearest major city, to undergo a series of tests. In utero surgery was considered for the infant, but the multi-cystic kidney had stopped growing after several weeks, so further action would have to wait until the baby was delivered.

Gabrielle was delivered by natural birth at Queen Victoria Hospital in Adelaide before being transferred to Adelaide Women’s and Children’s Hospital for further care. “When she was newborn, [the right kidney] was taking up a lot of her abdominal cavity, so her belly was distended and distorted… Otherwise, she looked like a normal baby,” said Cassandra. Gabrielle’s odd-shaped abdomen was holding an adult-sized kidney, bursting with sacs of fluid. Any time she was laid down, the organ would push against her other insides, causing her stomach to reject its contents. The result was a baby that was lacking proper nutrition and was constantly dehydrated, and in constant distress.

The hospital left the surgery as long as they could, in the hope that the infant would be strong enough to tolerate the invasive procedure to remove her left kidney. Six weeks was the limit before she had to go into the operating theatre. “She had to fast before the surgery, of course, which she didn’t enjoy too much considering she was used to second hourly feeds; she had to be fed regularly in small amounts. She went to surgery and was in there for about three hours or so, and when she came out she was in a lot of pain,” Cassandra has to pause and tries to not get upset. “It was very distressing.”

Seeing her about to cry got me upset, so I tried to move on quickly. I asked her what my sister’s recovery was like.

“Very speedy… Her right kidney had started to function normally, and then started growing to compensate for the other kidney. She was a completely different child after the operation. She fed really well and began putting on weight… no problems since.”

Gabrielle told me she doesn’t really remember ever learning about her kidney and the story behind it. “Obviously they would have told me because I have a scar. You can hardly even see it now, you can only see where it begins, it's like a little dimple. I never really learned about it until a few years ago when Mum gave me some papers and said ‘That’s what happened,’ but all I ever knew is that my kidney was like a bunch of grapes.” Her insides are changed, but on the outside Gabrielle is like a regular 19-year-old: happy, beautiful and unburdened. Her scars are invisible.

“I guess to be careful with your organs, they are so valuable and you see so many people who have been in accidents or who have cancer who want these organs, so you should treat them the best you can so if you ever had to donate your organs people could use them.”

“It should be a law [that you have to donate], I don’t understand why people are against it, it doesn’t make sense. What are you going to do with them once you have passed away? What, is your family going to keep them in a jar? There is no point, you could save more than ten lives with your organs. People can get your corneas, your lungs, your brain… Okay, maybe not your brain, but you get what I mean!”

We talked about the Australian Paired Kidney Exchange, a transplant option for patients with an incompatible living donor. I explained that if she ever needed a kidney transplant, but none of her family were compatible donors, one of us could still donate a kidney and swap it for one that was compatible, so two lives that would have otherwise ended could be saved.

“That’s a fantastic idea, why would you not help someone else that can help you? I’m a perfect example of how you can live without both kidneys, so I don’t understand why people aren’t donating them anyway. I don’t expect everyone to just go out and donate their kidneys, but if someone you knew needed a kidney you should offer yours straight away, because it’s obvious people can live without two.”

We don’t know if anyone in our family is a compatible donor for her, because we were told it could put unnecessary pressure and strain on our relationships, but with the Australian Paired Kidney Exchange, that problem doesn’t exist any longer. Gabrielle knows that we would all raise our hands to volunteer if she ever did need our help anyway.

“I really appreciate that people would give up their organs for me to survive. I guess that’s what you do for family.”

For information on how to become involved with the Australian Paired Kidney Exchange program, or to learn more about organ donation, visit www.donatelife.gov.au.

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