Lara's Story
Our beautiful second child Lara was born on the 17th September 2006. She had
jaundice from early on but it wasn't until her 6 week check with our Plunket
nurse that any concern was raised (because she also had pale stools as well as
the jaundice.) Lara had blood tests and we were immediately told to go to the
hospital for further tests as her conjugated bilirubin levels were high. I
mistakenly thought we were just going to have Lara under the special lights for
jaundice treatment ... but our story had just begun.
We were admitted to Kidz First Children's Hospital at Middlemore right away for
lots more tests and an ultrasound scan, then referred to Starship Childrens
Hospital, Auckland for yet more tests and finally, a liver biopsy.
The biopsy confirmed Lara had Biliary Atresia, a condition
where she had no bile ducts to drain the bile from the liver. The bile is
essential to break down fats and proteins in your food so it can be absorbed
into the body. The bile build up is also what makes the skin yellow. Without
bile ducts draining the bile it builds up in the liver causing scarring and
eventually cirrhosis.
She was booked for the 'Kasai' surgery at exactly 8 weeks old. They took part
of her intestine (45cm) and attach it directly to the liver (after cutting away
some of her liver which was damaged). Lara spent 3 weeks recovering in
hospital. The kasai is not a cure, merely a stop-gap to enable Lara to grow and
undergo transplant at a later date.
We came home for two weeks and then Lara was readmitted with suspected
cholangitis, an inflammation of the liver where the new part was attached.
While in hospital she also caught rotovirus, a common hospital bug. This meant
both she and Hamish were isolated in hospital and didn't make it home for her
first Christmas. Hamish spent his 3 week Christmas break in hospital caring for
Lara while I looked after Jake at home while recovering from the acute stress I
developed when we came home after the operation. Her liver was hard which means
scarring and her liver function tests were on the high side. So we played a
waiting game, keeping Lara well and growing and healthy. This proved to be
difficult, and Lara was in and out of hospital frequently.
Lara was admitted in Feb 2007 (age 5 months) for pre-transplant tests,
including MRI, heart xray and scan, endoscopy and blood tests. She was listed
immediately for a new liver. It was very uncertain whether a deceased donor
would come up due to our shortage of donors in New Zealand so her daddy Hamish
was tested to be her live liver donor. Many amazing people came forward to
offer to be Lara's live donor. They were all compatable with her blood group
and the doctors chose to start testing with her father.
In March 2007 Lara was readmitted with a high temperature and we realised she
would not be allowed home before transplant due to her fragile condition. She
received infusions of albumin and blood products regularly to keep her stable
but her condition was very serious. We felt an urgent need to find a donor as
we could feel her slipping away from us swiftly. We believe, at the time of her
transplant Lara had only a couple of weeks left.
Then in April a miracle happened. On the 18th April 2007, just a day after we
found out Hamish was unable to be Lara's donor (due to a genetic disorder
haemochromatosis), a liver came up from a deceased donor. We feel so lucky and
privileged to have been given this gift of life for our daughter. The op went
well but was long (12 hours) and the new liver took two hours to restart. After
quite a few hiccups in her recovery, including pneumonia, Lara returned home
(briefly!) on her daddy's 40th birthday, May 18th. Yes, we have been frequent
visitors to Hotel Starship in the years since transplant as Lara has had many
ups and downs with her recovery. She has had stents in her bile ducts to keep
them open, biliary reconstruction surgery and numerous t-t ube changes, blood
tests, liver biopsies and tests.
How do I begin to thank the donor family - words do not seem enough. I hope
that knowing Lara has a part of your loved one living on inside her and giving
her life, gives you some comfort. We are incredibly grateful to our doctors and
nurses at Starship and to the Kids Foundation for their ongoing support which
helps us survive the financial costs of being a hospital family and also
provides our kids with fun outings and Christmas treats.
