My Story:
Jack
From Palmerston North
Jack was born on 6th December 2022 at 1.40am, labour went well and we went home a few days later. We had our regular midwife appointments it wasn’t until our last sign off in January that our midwife notice that Jack stools were lighter than normal and was concerned about this.
She referred us to the Palmerston North Hospital to get Jack checked out that day - Friday. When we went to the hospital, they took some bloods from Jack and the results came back high, they believed Jack had Biliary Atresia. They told us we would need to go up to Auckland Starship Hospital to get a Liver Biopsy done that Monday. This was very scary for us as new parents and the unknown. We had to go back on Saturday for more bloods and to give us more vitamins and new formula. On Monday at 1pm Jack went and got his Biopsy done. We got the results on the Wednesday, and it came back negative for Biliary Atresia.
We stayed up in Auckland for one week before they cleared Jack to go home. With the plan to do weekly bloods and keep doing the vitamins back home. Friday 3rd February Jack went in for his weekly bloods at the Palmerston North Hospital as normal. Jack’s doctor called us and informed us that his results didn’t come back great, she then contacted his Starship doctor to see what they would like done. On Wednesday 8th February Jack’s Starship doctor contacted us as they wanted us to go back to Starship to do another biopsy to make sure, they hadn’t missed anything as his bloods weren’t getting better since we had come home.
Jack got his 2nd biopsy done stayed overnight and then we headed home as the results took up to two weeks. We got the results back mid-February they were the same as the last biopsy negative; they then sent off a genetic test to Finland we had to wait 6 -8 weeks for results. While we waited for the results it was very hard not knowing what was wrong with Jack, we continued to do weekly bloods. In Mid-March his doctor called us that Jack’s blood count is getting higher and that they wanted him to get ultrasound done on his liver and start new a medication Ursodeoxycholic Acid. In Mid-April 2023 Jack went for his annual bloods while there this doctor had his genetic results.
Jack was diagnosed with Cholestatic Liver Disease (PFIC 2) this is a rare genetic disease. The team were happy with Jack and how the medication was stabilising his liver which meant he didn’t need a transplant until it can’t do it anymore. Jack went to monthly bloods and every three months for an ultrasound. In July 2023 Jack’s doctors got concern as he wasn’t putting on any weight and his blood counts were high again, they increased his medication and got moved back to fortnightly bloods, there was talk if things didn’t improve than we would need to go back up to Starship. Jack’s must of heard this as he put on weight and his jaundice started to go. This whole time Jack was a happy, checky baby boy bum shuffling all over the house and at daycare. The hardest part was at nighttime when Jack would be the itchiest and wake up 3-4 times in the night scratching his body, he has scabs on his legs and the sole of his feet would be raw.
There wasn’t much sleep happening in our household. Behind the scenes his Starship doctor was working on Jack to trail a new medication – This got approved in November 2024 3-month trial. He finished the trial at the end of February 2025. Over this time, Jack did monthly to see if things changed in his levels. Unfortunately, this didn’t change his blood counts. In March 2025 we had a zoom meeting with his Starship doctor. It came to conclusion that we needed to head up to Starship to get the Liver Transplant assessment done on Jack. In April 2025 we headed up to Auckland Starship for the week to do the assessment done. In May 2025, Jacks doctor called to inform us that he would be going onto the transplant waiting list.
Being on the transplant list meant monthly bloods and 3-month ultrasounds. This summer we made some changes to help Jack sleep at night we moved him to a cooler room that doesn’t get much sun during the day so then his room isn’t hot at nighttime, and we found him a cooling fan as well. Since Jack has been on the waiting list it’s been strange always making sure your phone is on you, is the sound up loud, it made us question do we go out of town for a getaway because what if we get that phone call and we aren’t home how long would it take us to get back and have everything ready to go. When I got the phone call from Janet asking if we would like to go away for a weekend in Waiheke Island for 3 nights, we couldn’t believe it. We are so grateful for Dan at Holiday Helpers Waiheke, and his generous sponsors, for giving our family some much needed time away. Waiheke is an amazing holiday location, away from the hustle and bustle so we can relax as a family, but still close to Starship Hospital in case of getting the ‘call’.
