Pīpīwharauroa Te Rangimoana

Pīpīwharauroa Te Rangimoana – Tokoroa

Immunodeficiency / Hemophagocytic lymphohistiocytosis (HLH)

Pīpīwharauroa has been through a lot in her very short life. To be called a ‘miracle baby’ is no small feat. But she is exactly that.

Born on Christmas Eve 2018, she is the youngest and smallest person in New Zealand to receive a liver transplant.

When Pīpīwharauroa was born she seemed healthy and just like any other baby. Her family was overjoyed at such a special gift and enjoyed their first two weeks with her. Sadly, this wasn’t too last, at two weeks old her mum put her down for a nap and when she woke up the whites of her eyes were bright yellow with jaundice. Although jaundice can be normal in a new-born, when it moves so quickly to the eyes it’s a glaring warning sign that something is very wrong.

Taken to Tokoroa Hospital, Pīpīwharauroa’s family were told to rush her to Starship. It was there, after tests that showed elevated blood levels, that they were told her liver wasn’t working and that she might need a transplant. Because she was so small the hope was that she would battle on and not need a transplant at such a young age. However, because of the severity of her liver failure, it soon became apparent that this could not be the case. Pīpīwharauroa needed a liver transplant and she needed it quickly.

Finding a liver donor can be hard and for Pīpīwharauroa it was twice as hard as for others. Not only does the donor have to be a match whether it’s a live donor or a deceased donor, but in Pīpīwharauroa’s case, the donated piece of the liver also had to be small enough to fit into her tiny body. Amazingly, Pīpīwharauroa’s aunt, Mina, had herself tested without her family’s knowledge to see if she would be a match to Pīpīwharauroa. She was and so she travelled from Australia to be a live donor for her niece.

After 10 hours of surgery, Pīpīwharauroa had a new liver and a new lease on life. She recovered well and two months later she was able to return home. However, shortly after this, again Pīpīwharauroa was in trouble. Her liver functions continued to go up and she was sent back to Starship for biopsies and tests. It wasn’t liver rejection, but it was discovered that she had HLH (Hemophagocytic lymphohistiocytosis). Pīpīwharauroa’ s family had 3-4 months to prepare for the next major step. She needed a bone marrow transplant. Amazingly there were two 100% matches in New Zealand (Māori don’t usually register for donation). After two months preparation for the transplant, and then the procedure and recovery period, she is getting stronger by the day. There is still a very slim chance that her HLH could return but because she was lucky enough to have a 100% match donor bone marrow, it shouldn’t. Now, she is regaining the development that she had lost while she was sick. She has learned to suck again, talk, and sit up.

She’s a very happy baby and loves her mum, but her sister, Amohia, is her favourite person. Her family hope that she will be able to “live as much of a normal life as she possibly can with the understanding that what she’s been through makes her special’. They also hope she helps other families through sharing her story. We are routing for you Pīpīwharauroa, your strength and fighting spirit are amazing and we wish all the best for you and your family in the next step of your recovery. 

IDFNZ 'In Touch' 2018

Update:

Christmas Eve 2021 we celebrated Pīpīwharauroa's 4th Birthday!

Who is Pīpīwharauroa as a young 4 year old girl? 

She loves her kindy and enjoys any outdoor activities. 

Pīpīwharauroa is definately a confident little girl with a happy loud personality. She loves being around her family and making memories with her sister and all her loved ones. 

We are reminded everyday ohow blessed we are to have Pīpīwharauroa in our lives, she is truly our miracle baby.

Pīpīwharauroa's Family, 2022