Nolan

Our BA journey started in Singapore 2012. Nolan was only 9 weeks old when he was diagnosed with Biliary Atresia. He did not present any other symptoms except being jaundiced at birth and alarm bells sounded only after the 2nd month check-up when the pediatrician picked up high abnormal jaundice levels, and chalk color poo and investigated further. It came as a big shock to us to learn of this chronic condition.

Nolan had to undergo a Kasai procedure in order to allow the trapped bile in his liver to flow and help digest his food. Without this procedure, he would not be able to survive. We were very thankful to the Pediatric Surgery & Gastro team at KKH Singapore.

This was a very tense and fearful period in our lives as first-time parents. Not only was it really difficult to surrender our precious baby to the surgeons and doctors, it was also a situation that was beyond our control.

There were many sleepless nights during the recovery period at PICU and high dependency wards. We had to give him a special milk formula to help him gain weight and to provide him with all the nutrients during the recovery. The first couple of days were a waiting game to see if the Kasai procedure worked. I remembered we couldn’t hold him because of all the lines attached to his body and just jumping at every doctor’s ward visit in hope of good news. The days were long and incredibly nerve wrecking.

The post Kasai recovery took about 3 weeks and eventually we were discharged.

We quickly had to learn to care for our high needs baby. The objectives were to increase his weight and make sure the home environment is clean and hygienic. Slowly but surely, Nolan started gaining weight and we can see jaundice clearing, especially from his eyes.

The early days were filled with constant worries and trying to keep him as well and healthy as possible. I was obsessed with sterilizing everything, making him healthy meals and reading up about his medical condition.

Often, the research only made me more fearful and worried than ever. It was only once I sought support on some BA support groups on Facebook and reached out that I felt less alone and more informed. We were also more willing to share with other BA parents who were in search of hope.

During the first couple of months, Nolan had 5 bouts of cholangitis and each time we needed to be warded for up to 21 days for antibiotics treatment. It was really disrupting, frustrating and tiring. But Nolan’s smiles and laughter always helped us get through those long days and nights.

For the 1st couple of years in Singapore, we managed to learn to enjoy our time with Nolan to the fullest and our family grew. Nolan became an older brother and started kindy. His condition was managed with monthly routine gastro checkups, bloodwork and medication. He was an active little boy despite the hospital stays and braved the unpleasant procedures with gusto.

In 2018, we moved to Auckland to be closer to family. We’ve visited New Zealand many times and enjoyed the pace of life, hence, when work opportunities beckoned, we decided to pack our bags and relocate.

Unfortunately, 2 weeks before the move, Nolan started presenting portal hypertension issues which can cause dangerous life-threatening gastro bleeds if not managed properly. As soon as we arrived in NZ, we were referred to Starship children’s hospital and introduced to a very experienced gastro/ liver team.

After numerous tests and assessments, the liver/ gastro team at starship advised that Nolan was a suitable candidate for a transplant and that we should go ahead with it while his native liver was still doing well and he was healthy enough to recover from the transplant. It was a really stressful time for the family.

As the saying goes, it doesn’t just rain, it often pours. There was so much for Nolan to adjust to, being in a new country, trying to adapt to a new school system while trying to make new friends. For a 7-year-old, this was definitely not on his list of things to do.

On March 27th, we received the call. Although, we had prepared ourselves and our son on this medical challenge, it still came as a shock. The major operation took a toll, he lost 5kgs and was bed bound for almost a month. To watch him struggle physically and emotionally was really hard. The recovery was difficult and being a fighter, he was constantly

wearing us down with questions and it was a battle with every procedure. We are grateful to the team of nurses and play therapists at ward 26B. They were extremely patient, kind and took time in getting to know Nolan.

Nolan’s post-transplant recovery was not always doom and gloom. The Northern health school visited him for a couple of hours during the week to help him with his school work and learn through interesting games. He also enjoyed borrowing games from the playroom, and we even learnt to play monopoly which is now one of his favourite boardgames. He also enjoyed playing games on the Ipad and building Lego in the playroom. Once in a while, we got a surprise furry visit from the Starship Hospital Pet Programme. We also went on rides on the wheelchair around the ward. Nolan always looked forward to the visits from the radio lollypop volunteers when he was at Starship. They always bring a bunch of fun card games and brightens his evenings.

Nolan’s post-transplant recovery was not always doom and gloom. The Northern health school visited him for a couple of hours during the week to help him with his school work and learn through interesting games. He also enjoyed borrowing games from the playroom, and we even learnt to play monopoly which is now one of his favourite boardgames. He also enjoyed playing games on the Ipad and building Lego in the playroom. Once in a while, we got a surprise furry visit from the Starship Hospital Pet Programme. We also went on rides on the wheelchair around the ward. Nolan always looked forward to the visits from the radio lollypop volunteers when he was at Starship. They always bring a bunch of fun card games and brightens his evenings.

As the year progressed, the complications increased and it was a frustrating time for us and the medical team. They were trying to figure out reasons for the bile duct obstructions while we were trying to find suitable dressings to prevent the bile leaks. We were just mending and fixing issues, one after another. It slowly became clear that the grafted liver would eventually fail and that Nolan would need a new one. This was heartbreaking for us to know the liver transplant had failed so quickly and that we might lose him if he didn’t get another one soon. We hung on to hope and prayed that a suitable donor would be available soon. During this time, his immune system was attacked by a virus and he lost almost 10kg. He was always tired and felt weak and we had to put a hold on a transplant. He was in hospital for long periods of time for strong PTLD treatments, but we were blessed with complimentary rides from the EV community as Nolan loves EVs and receiving Christmas presents from the kind donors & IDFNZ. These meant a lot in a stressful period for our family. It provided good distractions and helped make the experience less unpleasant and more memorable.

In June 2021, we received a liver from a paediatric donor. Although it was a perfect match, this was one of those moments mixed with dread and hope. Nolan had just recovered from the virus attack and the risk associated with a second transplant was significantly higher than the first one. I remembered how Nolan was rather indifferent and mentioned how fed up he was with his complications and that he couldn’t wait to receive his new liver.

We were really grateful the liver transplant went well and that the recovery was smooth sailing. It was a remarkably big difference to the first one. Nolan was sitting up by the 2nd day after the operation and we were discharged after 7 days! We were in awe and could hardly believe our ears when we heard of the doctors’ decision.

To say Nolan had a new lease of life would be an understatement. The change was such a dramatic one and till today, we’ve only been back to Starship for routine checkups and just monthly bloodwork at our local Labtest. He is also taking just one type of medication daily which is his anti-rejection medication. Its been quite a challenging journey for us and we can’t wait to make up for lost time! We’ve been planning family holidays and activities, trying to create as many happy memories as possible.

2 years now, Nolan’s been thriving on his new liver. He has been living life to the fullest. Finally, he is able to take part actively in sports like hockey and basketball. He has also received a full suspension bike from Make-A-Wish foundation and has been riding it to school when the weather’s good. We are eternally grateful to the families who chose to donate their deceased family’s organs. It has not only saved our son’s life but have given us much joy and hope watching him grow and thrive.