biliary atresia and our baby

2010-02-22T18:35:00.000-08:00

An unusual day here yesterday, with a late invitation to present our perspective as the family of an organ donor recipient.

The whole team at Ten was ace, and smoothed the way for TV amateurs like us. It's surreal to share the lift with people you've watched on the box for years, and to sit in a real Green Room with the show regulars and the production staff. Rose was very excited off-screen, and pretty quiet on-screen (even yawning and rolling her eyes).

Our segment is found in the link below, about 3 minutes in, until about the 8 minute mark. . .

Rose on Network Ten's The 7pm Project

2009-05-18T18:24:00.001-07:00

grown-up girl at a family birthday dinner

dressing up in an op-shop bride's dress and veil

When I put this blog together, I had hopes of keeping it updated with Rose's milestones.

So much for my intentions!

Here we are, five years after Rose received what she describes as "the best birthday present I've ever had."

Here is our bouncing 6-year-old school girl, whose liver function remains (fingers crossed) perfect.

2007-07-30T00:58:00.000-07:00

friends, then, and now. . .

Rose on the left, and Bella on the right.

Photographed in our hospital room in December, 2003, about 5 months before Rose's transplant.

Rose and Bella play hilariously together whenever they meet. Their common experience (both born with biliary atresia) isn't exactly on their agenda. Dancing is, as well as cuddling, and falling over.

The time has come now for Bella - she requires a liver transplant.

Australian Organ Donor Register

2007-02-07T03:42:00.000-08:00

Shane waits outside the broadcasting booth at ABC Melbourne's radio studios

On Tuesday 6 February, we were guests on Jon Faine's Conversation Hour, interviewed by Jon and his co-host Marieke Hardy.

Jon and Marieke first interviewed Allan Turner, the father of the late Zaidee Turner. His daughter's sudden death in December 2004 led to Zaidee becoming the only child organ donor that year in the state of Victoria.

In honour of their daughter, Allan and his wife Kim set up the awareness-raising organization Zaidee's Rainbow Foundation. Many readers will already be familiar with the work of this formidable man.

Coincidentally, Allan recently left a comment on this blog, and I sent him an email in reply. I had no idea though that that we would be meeting him so soon. Rose was delighted to cuddle him, and to chat with him about the lovely Zaidee.

Zaidee's middle name is Rose.

Rose leaving the ABC's Southbank studios, gripping her Nan's hand, Rose claiming that she was keen to eat a cheese sandwich

2007-02-05T04:24:00.000-08:00

The day when we held our frail 8-month-old, hovering below 6 kilograms, wondering whether or not she would live. . . well, it seems more distant than ever.

ROSE HAS BEGUN KINDERGARTEN

2006-09-23T00:30:00.000-07:00

The Australian Transplant Games are over until 2008. Rose's photo made it to a couple of newspapers this week: the Geelong Times (article entitled "Plenty of heart on the track"), and the Herald Sun (article entitled "New shot at life").

My incredibly generous cousin and her husband have been hosting us on the beautiful Bellarine Peninsula, near Geelong, so that we could easily attend the Games. We're so grateful for their love and for their personal support. And on a broader level, they are strong supporters of organ donation, with a much loved family member six years ago having donated all of her organs, changing forever the lives of eight recipients.

I have mentioned baby Rani. She died this month before she could receive a liver transplant that she desperately needed. Please think of her bereaved family, and others like them who will lose a family member this year because of the shortage of organ donors.

Most importantly, if you do support organ donation, please clearly communicate your wishes to your family, to spare them the anguish of wondering what you would have wanted. Many of those reading this blog will have already taken the crucial extra step to talk with family, apart from signing up on the Australian Organ Donor Registry. But there's no harm in my mentioning it again.

2006-09-18T21:54:00.000-07:00

Rose is the youngest registered competitor in the National Transplant Games, being held this week in Geelong.

Pictured here at the opening parade, with some of her cute little Victorian competitors.

Rose's 10 metre run will be in honour of two people: her wonderful donor who has saved her life; and her little 12-month-old friend Rani, who died on September 1, waiting for a liver transplant.

2006-07-07T15:45:00.000-07:00

Organ Donation

Rose's excellent doctors, and possibly hundreds of other professionals, delivered her to the point of being able to receive the gift of a donated liver. Our family and friends held us together during the long wait.

But without the decision of a grieving family and the gift that flowed from their actions, nothing could have helped Rose to survive for much longer.

Overly sentimental words seem inappropriate in thanking families who have agreed to the donation of organs. It's hard to get the words right.

I want to tell families who have donated organs that we cherish the gift of Rose's liver; that our little girl is now strong and healthy, with no apparent memory of her illness; that we never forget their generosity.

We are, of course, registered organ donors.

Shane describes like this his feelings about Rose receiving a liver:

"With young children, it is usual to imagine with excitement and trepidation their future; fanning out like the branches of a tree are the unrealized possibilities for their lives. I see Rose sitting at the trunk of such a tree, her life full of potential but as yet still narrow. With that potential our little girl also carries the skill, dedication, love and luminous generosity of the people who have made her life possible, and on her journey, nestled close to her heart, she cradles the liver of her greatest friend."

2006-06-14T17:36:00.000-07:00

In the pink, mucking around with her sisters at home. Rose's liver function is now normal, and she is in excellent health two years post-transplant.

2006-05-19T09:00:00.000-07:00

2006-04-24T15:49:00.000-07:00

3 years old

2006-03-04T15:24:00.000-08:00

2006-02-18T13:00:00.000-08:00

2006-01-14T15:14:00.000-08:00

2006-01-09T07:58:00.000-08:00

2006-01-05T12:29:00.000-08:00

Walkerville South, Victoria

2006-01-03T19:25:00.000-08:00

Rose is delighted at the chance to spend a whole week in the same house as her cousins, who have generously invited us along to their beach holiday.

2005-12-28T12:05:00.000-08:00

2005-12-26T11:40:00.000-08:00

with one of her uncles

2005-12-25T08:11:00.000-08:00

Christmas morning

2005-12-09T14:15:00.000-08:00

Walking to collect the kids from school

2005-11-02T10:40:00.000-08:00

Rose had a trip to the Emergency Department last night. She fell into what we were later told is a common Melbourne Cup Day trap for inquisitive toddlers - touching a hot barbecue plate!

2005-10-30T11:50:00.000-08:00

Shane and Rose being interviewed for the ABC TV news, at the Royal Children's Hospital, celebrating its ten year old liver transplant program

2005-10-22T12:56:00.000-07:00

at the school fete

2005-10-16T15:58:00.000-07:00

2005-10-16T13:56:00.000-07:00

2005-10-06T10:30:00.000-07:00

Rose was last night permitted to sleep in the family birth centre with Shane and Mia and me. We're grateful to the staff for granting us that experience, which was very settling for Rose. She spent this morning falling in love with her new baby sister.

2005-10-05T19:18:00.000-07:00

Rose became a big sister tonight, with the birth of Mia.

2005-09-30T15:19:00.000-07:00

2005-08-23T16:23:00.000-07:00

2005-08-23T16:20:00.000-07:00

Forster, New South Wales

2005-08-22T16:38:00.000-07:00

Port Macquarie, New South Wales

2005-08-15T12:55:00.000-07:00

on the farm

2005-08-14T14:10:00.000-07:00

Crowdy Head, New South Wales

2005-08-08T17:10:00.000-07:00

Manning River, Cundletown, New South Wales

2005-08-06T16:30:00.000-07:00

Crowdy Head, New South Wales

2005-08-06T16:20:00.000-07:00

Crowdy Head, New South Wales

2005-08-06T14:31:00.000-07:00

Crowdy Head, New South Wales

2005-08-03T10:54:00.000-07:00

Central Station, Sydney

2005-08-01T16:26:00.000-07:00

2005-08-01T13:58:00.000-07:00

2005-07-27T21:45:00.000-07:00

late night at the school musical

2005-07-09T14:29:00.000-07:00

2005-07-08T16:18:00.000-07:00

2005-06-13T14:08:00.000-07:00

2005-05-18T15:07:00.000-07:00

Discharged from the ward after a 2 night stay

2005-05-18T13:20:00.000-07:00

Awaiting discharge from hospital, and enjoying the novelty of her lunch tray

2005-05-17T14:54:00.000-07:00

brief hospital re-admission

Rose has had a rotten cold. She spiked 40 degrees on the thermometer last night, so to be on the safe side we brought her in to Emergency.

The medical staff in Emergency, when they discovered the many volumes of Rose's medical history, decided to err on the side of caution and admit her. Naturally, when "liver transplant" crops up in a child's file, the doctors tend to proceed conservatively.

She's having some IV antibiotics for a couple of days. Aside from her respiratory infection, she seems fine. Thankfully, her mild illness seems unrelated to her liver. Rose is enjoying socializing with a parade of her former health care staff.

2005-04-23T14:20:00.000-07:00

at the party for her second birthday, Rose tries playing the game of Uno with her cousin

2005-03-27T15:48:00.000-08:00

Easter lunch in friends' garden

2005-03-11T13:48:00.000-08:00

2005-02-14T18:30:00.000-08:00

not just a Valentine's Day celebration; a positive pregnancy test!

2005-02-04T14:48:00.000-08:00

EXCERPT FROM EMAIL TO FRIEND WHOSE LITTLE GIRL WITH BILIARY ATRESIA IS DOING EXTREMELY WELL

She has enquired about Rose's progress, and I'm replying here:

". . . the transplant surgeon last Friday reckoned that she's "normal". A couple of her liver numbers are still to settle on exactly normal, but they're hovering down near normal. Bilirubin, albumin and ALP are all looking beautiful. (Her last bilirubin level was 2, a big drop from her very orange days that had her bilirubin up over 600!)

But getting away from numbers, she's talking away, scooting around on her bum (her version of crawling), eating like a horse, sleeping like a top, is pushing 11 kilos. She's a very robust little girl. (We always knew she was mentally and emotionally robust, but now her body is coming to the party too.)

She ditched her nasogastric tube at the end of November and is on minimal medication. She hasn't had so much as a cold since she was discharged, despite exposure to all the germs in the school community that Lewis and Hannah must carry home with them every day."

2005-02-03T12:14:00.000-08:00

2005-01-31T15:17:00.000-08:00

EXCERPT FROM EMAIL TO FRIEND

". . .thanks for asking, . . Rose is thriving. She's fantastic liver-wise, and is busily catching up on the milestones she missed while lying on her back. She. . . sleeps beautifully, eats like a horse, and is great fun - we're all having a ball. That Royal Children's Hospital is bloody spectacular, with its cast of hundreds of brainy and kind people who looked after Rose and our entire family. They didn't want just to keep Rose alive, but to become a healthy girl.

Whenever we visit the hospital for one appointment or another, it takes us the whole day, really. We visit her ward, of course, but outside the ward we bump into so many people who we became close to, from the dears who sell raffle tickets at the front door, to the technicians in obscure little specialty departments, to the shrinks, the PSAs, and even the guys who used to make our coffee nice and strong first thing in the morning after a sleepless night with Rose. And of course the other fellow patients in there, some of whom aren't nearly as lucky as Rose has been. Life is great, but we'll never forget the people who made it that way."

2005-01-28T13:05:00.000-08:00

brief day surgery to have one stubborn stitch removed

2005-01-22T17:22:00.000-08:00

2005-01-17T17:01:00.000-08:00

A year ago I hoped that Rose would one day get her feet sandy at the beach.

My hopes are realized, but she has yet to learn to like the feeling. She cries if her feet venture off the towel!

2005-01-14T15:21:00.000-08:00

asleep in a shade tent at the beach - her first-ever beach experience

2005-01-13T12:56:00.000-08:00

2005-01-12T18:27:00.000-08:00

2005-01-09T14:10:00.000-08:00

2005-01-07T16:33:00.000-08:00

2005-01-07T10:01:00.000-08:00

Rose in the capable arms of her cousin

2004-12-25T14:38:00.000-08:00

2004-12-25T09:00:00.000-08:00

2004-12-19T16:00:00.000-08:00

getting acquainted with a cousin at Christmas lunch with Shane's side of the family

2004-12-12T16:34:00.000-08:00

2004-12-05T13:45:00.000-08:00

This girl doting on Rose at today's picnic is the beautiful daughter of dear friends. She and her brothers showed remarkable warmth and maturity when they visited Rose in hospital not long before her transplant.

Many of our friends have children who have been aware of Rose's illness. It has been fascinating to see the tenderness with which these older children interact with Rose. It's like some of them can truly appreciate the situation from which Rose has progressed.

2004-12-05T13:30:00.000-08:00

2004-12-03T22:00:00.000-08:00

That femur seems to have healed up.

Rose's physical strength and flexibility seem to be improving at an exponential rate. It is hard to believe that she could barely hold up her head in late September when she came home from hospital.

2004-11-28T10:15:00.000-08:00

Goodbye to the nasogastric tube that has been a part of Rose's life for the last 15 months.

She pulled it out two nights ago. So before re-inserting it for her, we thought we'd offer her formula to her in a bottle.

She happily took it, something she hasn't done until now. She took all feeds orally yesterday, and medicines too.

So if she eats, drinks and takes her medicine: no tube required.

This is a very significant step along Rose's road to a normal life.

2004-11-25T14:33:00.000-08:00

Rose giggles with her wonderful general surgeon. One of Melbourne's best-known and expert paediatric surgeons, he has operated many times on Rose during her long illness. Nothing is too much trouble for him.

2004-11-10T09:53:00.000-08:00

Enthusiasm for solids is carried over to the next day.

2004-11-09T19:34:00.000-08:00

Rose has decided to eat solids for the first time - starting with lamb cutlet and roast potatoes!

2004-11-02T11:33:00.000-08:00

2004-10-30T15:10:00.000-07:00

Rose is in the baby hammock, left rear, safely evacuated by her aunt.

Our birthday lunch this afternoon with the extended family was interrupted by the barbecue catching on fire(?!)

Rose's uncles seem to be trying to suppress smiles.

2004-10-24T13:02:00.000-07:00

2004-10-23T11:30:00.000-07:00

We bump into our nurse friend at our school fete. He's delighted to see Rose enjoying life out of hospital

2004-10-23T11:28:00.000-07:00

Enjoying the school fete. This time last year Rose ended up in hospital the night before the fete, with pancreatitis.

2004-10-20T14:30:00.000-07:00

It still feels like a supreme novelty to be attending hospital OUTpatient services, rather than the far more familiar INpatient ones.

2004-10-11T18:11:00.000-07:00

2004-10-03T16:50:00.000-07:00

2004-10-02T14:47:00.000-07:00

Pleased at having pulled out her nasogastric tube. (Rose retains it only until she learns how to eat and drink. Easier said than done for children who have had oral feeds banned for long periods.)

2004-09-25T14:05:00.000-07:00

2004-09-21T12:13:00.000-07:00

2004-09-18T09:00:00.000-07:00

waking up at home

2004-09-17T22:15:00.000-07:00

Rose leaving hospital after 10 and a half months' continuous hospitalization

2004-09-17T15:40:00.000-07:00

Some of the nurses on shift for Rose's last day in hospital. The party lasted all afternoon long.

2004-09-17T15:27:00.000-07:00

Rose in the arms of her paediatric hepatologist - the wonderful conductor of the enormous "orchestra" working to heal Rose. We love this brilliant woman.

2004-09-16T15:50:00.001-07:00

Rose has another farewell session with a favourite nurse. He gave her an inscribed copy of the wonderful Pat Hutchins book "Rosie's Walk". Boy, does that tale parallel our Rosie's Walk!

2004-09-16T15:05:00.000-07:00

A long journey with this exceptional nurse. She's the first nurse we encountered on the ward last September when Rose began her series of admissions for liver disease. Rose spoke her name shortly after learning to say Mum and Dad.
We have grown very close.

2004-09-16T14:30:00.000-07:00

2004-09-15T15:34:00.000-07:00

2004-09-12T17:43:00.000-07:00

A snuggle with a favourite nurse

2004-09-09T16:35:00.000-07:00

A story on Nan's lap

Have I mentioned that one of the complications of liver disease is an inability to absorb Vitamin D? This deficiency in the vitamin can lead to brittle bones.

In Rose's case, not only is she vitamin D deficient, but she has been too ill during her life to bear any weight through her bones. A recipe for super-weak bones.

To cut a long story short, Rose's femur was accidentally broken this week. It happened in Radiology, nobody's fault, in the presence of my mother, poor thing, who was doing one of her twice-weekly overnight stints with Rose.

By the way, we wouldn't have coped nearly so well with Rose's illness and recovery without the herculean backup of my parents. It is fitting that they were present at Rose's birth. Since the moment she emerged into the world they have accompanied our little family at every step. After Rose returned to the ward from ICU, my Mum began doing regular overnight stints with Rose. This has had many effects. One, it gives the kids the experience of having both Shane and I home with them at night, something they missed out on with Shane and I in our usual routine of alternating sleeps at the hospital. Two, Mum and Rose are deepening their bond. Three, Mum is enjoying developing a relationship with Rose's large health care team. It's rewarding all round. Mum says she wouldn't miss this opportunity for quids. Aren't we lucky?

Everybody feels terrible about this broken femur, but once her leg was placed in a cast Rose was again happy. She's waving that leg around quite nonchalantly. Bones mend.

We're naturally cautious whenever we move her, wanting to avoid any further fractures while we wait for her bones to strengthen.

2004-09-08T21:08:00.000-07:00

How do we find the words to thank complete strangers (and anonymous friends) who, upon hearing of our broken-down washing machine, have chipped in to buy us a new one? The kindness in this community seems boundless.

2004-09-06T15:15:00.000-07:00

2004-09-06T15:07:00.000-07:00

2004-08-30T15:17:00.000-07:00