Pipiwharauroa Wallace had liver transplant at just 2 weeks old.
Pīpīwharauroa (Pipi) Wallace has twice been given the greatest gift of all this year – life.
In January, aged just 4 weeks old, the wee tot became the smallest and youngest New Zealander to receive a life-saving liver transplant.
That gift was provided by her aunty, Mina Steedman-Prip, on January 23.
And now as she approaches her first birthday on Christmas Eve, Pipi's family have revealed the brave toddler has endured another brush with death; needing an urgent bone marrow transplant in July after contracting a rare genetic blood disorder.
In an exclusive interview with the Herald on Sunday, Pipi's mother, Ashley Steedman-Prip, has spoken of the ordeal – and the family's hopes for their beloved daughter's future.
"She was in isolation for four months - we kept that very quiet. We only got home three weeks ago."
Pipi is now in recovery mode; with her mother saying it took her three weeks post the transplant to re-learn how to drink with a bottle, smile and use her voice.
Doctors were alerted to the latest medical drama via weekly testing of Pipi's blood about three months after the liver transplant.
Steedman-Prip said doctors at Starship hospital noticed her results were "a bit out of whack".
Pīpī Wallace after her liver transplant surgery. Photo / Supplied
A biopsy initially showed there were no signs of liver rejection, with Pipi eventually being diagnosed with Hemophagocytic lymphohistiocytosis (HLH); a life-threatening condition which occurs when patients have cells in the immune system that don't work properly.
The rare disorder is more common in children than adults and leads to damage of organs, the brain and bone marrow.
"Pipi needed two months of chemo to get her prepared for the bone marrow," Steedman-Prip said.
What followed was four months of treatment and recovery.
Despite all the obstacles – including having to re-learn development skills - Pipi is a "beautiful and chilled baby".
"She had to learn how to talk and walk again," Steedman-Prip said.
"She forgot how to use a bottle to suck and chew - she has pretty much had to start all over again. When you have bone marrow treatment you are weak and have no energy to do anything. Because she was in hospital for such a long time her body just forgets. She couldn't drink so she needed a nasogastric tube through her nose, so after months of relying on that she has just forgotten."
Pipi can now say "Mum" and last week had her first shower after essential lines inserted during her hospital stay were removed.
It is hoped Pipi won't need further surgeries, and doctors have given her family a positive prognosis for the future.
When Pipi – named after the shining cuckoo – was born on Christmas Eve 2017, she seemed perfectly happy and healthy.
But two weeks later after an afternoon nap, Pipi woke with bright yellow eyes. Showing jaundice, she was rushed first from Tokoroa Hospital to Waikato Hospital, before then being taken to Starship.
"It happened so fast. She had little infections but when I saw her bright yellow eyes I called her midwife straight away," Steedman-Prip said.
"From that moment she deteriorated rapidly. We were told Pipi had acute liver failure and needed a transplant urgently."
Pīpī with her parents Ashley and Joey. Photo / Alan Gibson
Her life-saver turned out to be her Brisbane-based aunty, Mina Steedman-Prip.
Without telling the family Mina contacted the hospital and offered to donate part of her liver. When doctors discovered it was a match Mina was immediately flown across the Tasman to have the operation.
"The operation was so overwhelming for us, we had nothing to compare her with or get feedback from because at the time she was the youngest ever to have had a liver transplant," Ashley Steedman-Prip said.
Defying expectations, Pipi survived the gruelling 10-hour operation.
"Pipi was in paediatric intensive care for a week to make sure she didn't reject the liver and to ensure there was no leaking," her mother said.
"Once she stopped relying on morphine and started healing by herself, we knew she was okay."
The bond between Pipi and Mina was strong, with the pair regularly seeing each other via Skype.
They will be reunited again for a very special first birthday party next month, with Mina flying in from Australia.
Steedman-Prip said the family were planning a pink, gold and white-themed birthday party to celebrate "how incredible" Pipi was.
"A lot of our friends and family haven't had the chance to meet her yet," she said.
"After the liver transplant she was pretty precious and couldn't be around people. We want to thank everyone for their support. We feel blessed this baby has got a lot of angels looking over her.
"I want her to live life to the fullest and just enjoy her life as much as she possibly can. She's been through a lot and I only want the best for her and whatever she desires in life."
