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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