Saving Lia - How Sean McRae gave his stepdaughter a new life

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Saving Lia
How Sean McRae gave his stepdaughter a new life
NIKKI MACDONALD - The Dominion Post | Saturday, 16 August 2008

Emerging from the static is a white marble inside the butterfly-shaped shadow. "Ever had any kidney problems?" the sonographer asks, bringing the circular mass into focus on her screen. "Nope," Sean McRae replies.

Lying prone and facing away, his belly slick with ultrasound gel, his reaction is impossible to read. Sean's kidney had seemed the best hope to save his 17-year-old step-daughter, Lia Badcock-McRae, from a life shackled to dialysis. But a blood match and weeks of tests could be undone by the discovery of this stone, smaller than a pea.

Before the ultrasound Sean was nursing a water bottle to inflate his bladder for the scan and joking, "I've got a newfound respect for what pregnant women go through." Now he's subdued, but still hopeful. "I'm happy to have the one with the stone." But there's no time to mope - there's still the CT scan to come.

Then it's a quick exit to miss the commuter traffic back to his home in Masterton. And a helpless wait.

That was on March 20. Seven months had already passed since the McRae family's lives fell apart, in August 2007. Lia had everything going for her. She'd just been to her boyfriend's school ball, and was looking forward to her 17th birthday. Waking up feeling sick, she took the day off work. The doctor wrote it off as flu. About 9pm, she noticed a few spots on her stomach. Though she'd been immunised against meningococcal disease, her parents recognised the telltale sign.

That's about all Lia remembers. But Sean and her mother, Barb, can scarcely forget the rush to Masterton Hospital, the tense air ambulance flight through the dark to Wellington, and the nine days in intensive care, waiting and wondering. "She came about as close to dying as she could," Sean says. "It was a frightening time. We weren't too sure at that stage whether she was going to be waking up as the Lia we knew."

Already skinny, Lia's 54-kilogram weight dropped to 43kg in the intensive care unit. Her parents lived out of the car and snatched sleep at the hospital, before moving to Ronald McDonald house. Family filtered in from around the country.

Finally, after nine days in a drug-induced coma, Lia came around and asked, "What day is it? I've got work on Sunday."It quickly became obvious the meningococcal disease had caused permanent kidney damage. A transplant was her only hope of avoiding a life built around twice- or thrice-weekly dialysis, five dull hours at a time. Doubly dull for a 17-year-old allergic to reading.

Barb was the first to volunteer her kidney. But the blood types didn't match. Sean was a good prospect, with both parents O+ - the universal donor - and he turned up a match. Though Lia is his stepdaughter, Sean's been married to Barb for 15 years, so the two are close. Close enough for a constant volley of jokey insults between them.

Built like a prop, Sean's a dominant presence with a warm personality and quick laugh. Lia is slight and chirpy, with a splash of bright colour in her dark straight hair. The only obvious similarity, visually, is a preference for Puma sportswear.

A dive instructor, Sean risks losing his livelihood if the transplant alters his blood pressure. At the least, he'd have to shut his dive shop for four to six weeks. But he barely flinched at the thought of volunteering his kidney. "It was just a job that needed to be done. All the family were putting their hands up, I was lucky enough to draw the short stick. You don't think much of doing it for the kids. It also gets the rest of the family off dialysis."

***

At the moment, Sean drags himself and Lia out of bed about 5.30am on his one day off - Monday - and snakes over the hill to Wellington to get Lia hooked up to the mechanical filtration machine that clears her blood of toxins the way her kidneys should.

Every Thursday, Barb does the same. To make things tougher, Lia gets car sick. She's plucky and doesn't complain, and she's still working as a grocery assistant and forklift driver on the three non-dialysis days. But it's taxing - the dialysis gives her screaming headaches and nausea, or makes her eyes too light-sensitive to open them.

APRIL 10

Sean finally gets the call. The transplant team has decided the surgery can go ahead despite his kidney stone.

Two weeks later he's in transplant surgeon Andrew Kennedy-Smith's office, getting the run-down on plans to deal with his "peculiarity". In fact, there are two stones. Mr Kennedy-Smith calls up Sean's CT scan. There's the white marble and another tiny white fleck, both in the left kidney - the one surgeons prefer to remove because its blood vessels are slightly longer, making it easier to replumb.

A stone is usually no big deal. But, in a solitary kidney, it could cause kidney failure if it blocks the system on the way out, Mr Kennedy-Smith explains.

Though it's possible to laser-blast the stones before surgery, the surest method is to operate on the kidney after it's removed.

Lia sits quietly in the corner. "I thought those days were over," she says, crestfallen, when told she'll probably spend a week in hospital recovering. "How big is my scar?" she asks, holding a pinched thumb and index finger hopefully. "Maybe a bit bigger," Mr Kennedy-Smith says. But she perks up at the revelation Sean will need a catheter.

JUNE 23

A surgery date has been set for July 9, and the countdown has begun. Today brings relief - the last tests and appointments. While Sean's going through final checks, Lia's on dialysis.

Meeting kidney specialist Grant Pidgeon later, Lia's usual infectious humour is missing. She has good days and bad days, she says. Sleep is sometimes elusive and dialysis brings nasty headaches. Looking at her blood results, Dr Pidgeon concludes she's on the cusp of deterioration. "For someone your size that indicates pretty severe renal failure. If that goes up too much higher you need to go up to [dialysis] three times a week."

He discusses the surgery: the odds of success are much higher than for braindead donors, with about 97 per cent of live donor kidneys still working after one year, and 88 per cent after five years. On average they last about 15 years, but, if conditions are right, a donor kidney can still be going strong after 30 or more years.

The family has talked about the possibility of rejection or failure. But they're not ones to dwell on the negative. "It's just one of those things you have to face," Sean says. "If it happens we'll look for the next donor."

Lia must take immunosuppressants forever to prevent her body expelling the unfamiliar organ. There are two options - one that can cause dark facial hair growth and swollen gums, or one that can thin hair and increase the risk of diabetes. It's a stark choice for a young woman, but Lia is pragmatic. "Whichever you think is better."

Now it's upstairs for anaesthetic pre-assessment. Lia is flagging. As well as the toxins, dialysis has drained her spark. Tired, quiet and shivery, she waits, curled into the foetal position. She just wants the whole thing over, so she can be a regular teen again.

JULY 8

T minus one. The McRaes check in at Cancer Society accommodation Margaret Stewart House and family again trickle in from all corners. Lia has one last dialysis before being admitted and pumped with immunosuppressants.

There's a surprise in store. The nurses have decorated her dialysis machine with streamers, balloons and foam stars. Lia's hamming it up for the camera, sticking the stars on her eyes. Despite the easy smile, she's "happy, excited, scared and really nervous" about "getting the chop".

She'll be missed in a ward dominated by chronically ill older people. Both patients and staff have warmed to her cheeky wit and eclectic music collections - and to Barb's scones.

JULY 9

Sean is flat on his back in the theatre preparation room, but the insults and in-jokes continue. Barb's mum has come armed with a tin of kidney beans. Lia's allowed a quick farewell, before returning to the renal ward. Nerves haven't dulled her wit. Sean reckons he's going to charge rental for his kidney. "You'll have to pay me to babysit it," she counters.

Around 8.30am Sean is wheeled into the windowless theatre. As the anaesthetic mask cups nose and mouth and facial muscles droop, monitors take over, charting his vital signs throughout the surgery.

Once draped, the operation site hardly looks like it belongs to a human - 30cm x 30cm of shaved skin, painted iodine orange. There's a pregnancy-like swelling as the surgeon inflates Sean's abdomen with carbon dioxide, giving him room to work.

His belly is pierced at four points to accommodate the implements: surgeon on scissors and grasper, registrar on laparoscopic camera and suction. Video games come to mind as Mr Kennedy-Smith works the trigger-gripped controls, navigating using only camera images on a screen.

To the layman's eye it's an indistinguishable mass of fat and cling-film-like tissue. It's a perilous journey to reach the kidneys at the back of the abdomen, behind other organs. The spleen looms, the shiny stretched tent of the diaphragm in the background. The difference between right and wrong is only millimetres.

Ironically, a boom box plays Dave Dobbyn and The Herbs' Slice of Heaven.

As he cuts away tissue with the tiny jaws, Mr Kennedy-Smith's rubber-scuffed foot pumps a pedal, turning the implement into a cauteriser that seals tiny vessels to prevent bleeding, clouding the screen with steamy puffs.

It's painstaking work, freeing the kidney from surrounding tissue, exposing major blood vessels and tying off their minor branches.

The first irreversible step is cutting the ureter, which takes waste from the kidney to the bladder. It's midday by the time a fist-sized incision is made, about 10cm below Sean's belly button. Then it's back to the controls to staple and cut the plump red worms feeding the kidney. There's a sudden sense of urgency - the team has only 3-10 minutes to get the unplugged kidney out and chilled. Mr Kennedy-Smith reaches into the slit, his white fingertips appearing on screen like a bad horror flick. Out comes the sloppy mess, and on to ice.

Six minutes. Normally that would be it - the kidney would be bagged and iced and the theatre cleaned and refitted for Lia's operation.

But there are still those kidney stones to get out. He passes a scope through what remains of the ureter and threads through a fine wire, tipped with minuscule crocodile jaws to grab the stone. At least that's the theory. Mr Kennedy-Smith works with the registrar, one positioning the scope, the other controlling the wire. After some wiggling they find the yellow asteroid on its spongy white pillow. There's a collective sigh of relief as the jaws enclose it, after several attempts. A head-wringing tension follows as it slips out and disappears from view. The jaws are swapped for an extending basket, which proves more successful.

It's a lot of effort for something so tiny. The smaller stone is no bigger than a pepper grind, the larger one about 3mm in diameter. It's past 1pm when the kidney is triple bagged for sterility and bundled into a polystyrene coolbox and into the freezer.

Sean is sewn up and, at about 2pm, wheeled out to recovery. Phase one complete.

Back in pre-op Lia's bullish defences crack. Nerves have sent her blood pressure tripping out. Tears trickle between laughs and hugs. Mum is being brave, but looks fatigued: it's hard being relegated to the sidelines.

By about 3pm, Lia is no longer recognisable, prepped, anaesthetised and draped, in theatre. There's a singed hair smell and the sterile area (anything green-draped) looks crowded, with vascular surgeon Dilip Naik, two registrars and a scrub nurse.

A cut, longer than Lia's hopeful estimate, curves across her stomach, the skin clamped back for access. The kidney is unwrapped. This is the critical moment. Now the surgeon has just 45 minutes to get it replumbed in Lia.

"It's incredibly satisfying, but it is high pressure stuff," Mr Naik explains before the operation. Often, the surgery is made more challenging by obesity or diabetes. Young and slim, Lia "will be a joy", he says.

"Come on guys, let's have that ice now," Mr Naik barks as he waits for scrub nurse Amy Tosswill to crush more cooling cubes. Hers is also a demanding job. While meeting rapid-fire demands for fresh instruments, she must track every tool and swab to ensure nothing is inadvertently left inside. That means counting in and out more than 36 eyelash-sized needles used to sew together the blood vessels.

A theatre nurse notes the time, 3.31pm, as the kidney slides into the cavity under the light of Mr Naik's fluorescent blue, miner's style headlamp. Lia retains her own two kidneys. The new addition is placed lower, next to the bladder, and hooked up to the main vein and artery in her pelvis.

After 21 minutes of fiddly stitching, the newly connected vessels are unclamped. The kidney instantly swells and turns from grey to crimson as blood flows in. It works.

If all goes well, Sean will have given Lia the one thing no drugs could - the gift of a normal life.

Sean was back on his feet so quickly after the operation staff dubbed him superman, and Lia (now 18) is recovering well.

http://www.stuff.co.nz/stuff/dominionpost/4657316a6482.html