Pipiwharauroa’s story is an amazing one
She has been through so much in such a short time. From being one of the youngest recipients of a liver transplant ( see Part 1 of her story under "our people" ) to undergoing a life saving Bone marrow transplant just months afterwards.
Although born healthy, by 2 ½ weeks old she had become lethargic and jaundiced. Doctors weren’t worried until she went down for a nap at home and woke up a few hours later with jaundice so bad the whites of her eyes had gone yellow. She went downhill very quickly from there. She was in acute liver failure and had two days to survive if she didn’t get a transplant. However, she rallied and for three days fought on. Unfortunately, her little body couldn’t hold out and she was placed on the liver transplant list.
Amazingly, Pipi’s aunt stepped forward and was deemed a match to her. After 10 hours of surgery, Pipi had a new liver and a new lease on life. She recovered well and two months later she was able to return home.
However, again Pipi 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 luckily, but it was found that she had HLH (Haemophagocytic lymphohistiocytosis). Pipi’s family had 3-4 months to prepare for the next step. She needed a bone marrow transplant.
Amazingly there were two 100% matches in New Zealand – Maori don’t usually register for donation. After two months of pain in preparation for the transplant, and then the procedure, Pipi and her family have now moved to Ronald McDonald House and 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. Hope she helps other families through her story.”
We are routing for you Pipi, 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.