Eli

In 2021 we read about IDFNZ member, Eli Gannaway, being diagnosed with Biliary atresia and undergoing a Kasai procedure. This year, Eli continued his medical journey and had his liver transplant. Mum Tori kindly updated his story with part 2, to share their overall journey from diagnosis of BA all the way through to liver transplant.

Eli was born in lockdown on April 15^th 2020. He seemed healthy and his family were overjoyed to bring him home. After three days his mum Tori’s midwife came for a checkup and noticed that he was slightly jaundiced. Tori had noticed the same thing but didn’t realize this was a warning sign for something serious. Luckily her midwife knew that jaundice could mean something was very wrong with Eli.

Under the midwife’s advisement, Tori and her partner took Eli to the doctor for a blood test right away. Keeping her phone on her afterwards was something Tori was grateful her midwife told her to do – she received a call late that night from the doctor telling her to bring Eli to hospital immediately. His bilirubin numbers were all over the place and there were no answers yet as to why.

The family was admitted to Waitakere Hospital for five days in lockdown as more tests were run. Eli was also put under a biliblanket for twenty-four hours. This is something similar to a sunbed which is a luminescent blanket and a blue light on the baby which can sometimes get rid of the jaundice and help the bilirubin levels even out. Unfortunately, this didn’t help Eli. Even though his bilirubin levels had dropped slightly, and his liver function was slightly better, it still wasn’t enough to satisfy the doctors.

The next step was a liver biopsy at Starship. The next week Eli, Tori and her partner Alec, awaited the trip to Starship for Eli’s liver biopsy. Due to lockdown, the family couldn’t have visitors or leave their room and Alec was only allowed to stay for a few hours at a time (although the nurses let him stay a little longer). On the final night before their trip Alec persuaded the doctors to allow them to go home for the weekend. They were lucky to have this as this was the last time they would be home together for a while.

The next Monday they traveled to Starship and Eli was admitted. His biopsy went well but it didn’t give any answers as to why Eli’s liver function was all over the place, or his bilirubin was high. Tori and Alec spoke with the liver surgeon and he explained that there were a few different possible diagnosis with Eli’s symptoms, however, the only way to be absolutely sure was to do an exploratory surgery. Three days later Eli went into surgery. Two hours into the surgery Alec and Tori received a call – Eli had Biliary Atresia. The surgeons performed a Kasai to see if that would help him and he was taken to recovery.

The Kasai was successful. After a few days of pain and not feeling great, Eli’s skin lost it’s yellow colour and his pale poo started to become a healthier colour. After two weeks of recovery the small family was able to return home. Eli was finally able to meet his extended family and the three of them settled into normalcy.

Eli still had to go to hospital for blood tests to keep an eye on things but although those started off weekly, because he was doing so well they were then moved to fortnightly, and then three weekly tests. A nurse also came to check on him and again that was extended out from weekly to three weekly as he continued to thrive.

Eli was growing, catching up with milestones he had been missing, and feeding well when a routine blood test in March of this year showed that his bilirubin was starting to climb again. The family had enjoyed a year of normalcy and were now scared of what could happen next. They were sent back to Starship and Eli was diagnosed with Cholangitis. This is a common infection in children who have had a Kasai procedure. He was given antibiotics and bounced back, but two weeks later Eli was once again struggling with Cholangitis. He went back to Starship and had IV antibiotics and was monitored. The silver lining to this was that the family got to see nurses who had helped them the previous year and because the country was no longer in lockdown they were able to leave their room and visit the playrooms. Eli also learnt to walk at this time.

Unless infection occurs again, Eli won’t have to endure a liver transplant yet. It’s something that has become a black cloud of worry over Tori as she knows that at some point Eli will have to go through the ordeal of a transplant sometime soon.

While they wait and continue to live their lives, Eli continues to be monitored by his specialists. Just recently he had a laparoscopy to check his spleen and liver size as well as for any sign of portal hypertension which is also common for children with Biliary Atresia. Luckily nothing seemed too serious or swollen. Blood tests which had started again as weekly are now back to monthly and other tests need to be done to monitor how things are going. Now that the country is once again in lockdown certain checkups have had to be rescheduled but live ticks on almost like normal.

Eli is a happy little boy who looks so healthy that you would never know what he had been through by just looking at him. Tori and Alec are so happy he is thriving and learning every day. Tori is especially happy that he was so little when everything happened at the beginning that he has no memory of them. They hope Eli can live the best, average, normal life as he grows up and that being scared won’t stop him from doing anything. They know he will have limits, but they want him to know that even though he has to be careful he won’t let that control his life and the choices he makes.

2024 Update

After 3 years of enjoying his life to the absolute max, the one thing that was always in the back of our minds came to be.

 Eli was born with Biliary Atresia, and at 2 weeks old he had a successful Kasai procedure, and because of that, we got to see our boy get the most out of life and of his failing liver. We were told a liver transplant was basically inevitable, so the thought of anxiously waiting constantly was extremely stressful throughout the early days, but as time went on we learned to live with it and carry on.

The end of January, we were invited to a family friends birthday party. Eli was the only kid, and he spent the whole night eating an incredible feast, dancing with all the ladies and won the hearts of everyone. Looking back now, it was like a last hurrah to the old liver.

One thing about living rurally, is the reception is terrible. So, when we go to bed we’d have to make sure to put our phones on the window sill. And that night after we got home from the party, I almost forgot! Lucky, I didn’t, because just after 5am we got the call to say there was a perfect match and to come down to starship.

 I’m very fortunate to have had my partner Alec, sister Rosie and mum in law Joy to keep things calm while we packed up and my little Eli, none the wiser but very excited to go on an adventure.

Walking into Starship and understanding what was to come and Eli not, was a horrible feeling, but his happy spirit kept us smiling throughout the day. After initial blood testing and lots of chatting with the incredible teams, we took the time to relax, gave Eli a shower and all snuggled up in the bed with his fav teddys.

 By 3pm they were ready for us to take Eli over. With his supporters in tow, we wandered over. Feeling mixed emotions of scared, anxious and also relieved that it was finally going to happen.

Alec and I got to take Eli into surgery, and my heart was breaking watching his eyes close and body relax, but we knew he was in safe hands. After leaving Eli we felt lost and unsure what to do, but we were welcomed into the Ronald McDonald lounge/rooms to stay, which we are incredibly grateful to have a place to rest.

 At 1am I received a phone call from the surgeon to say everything went great and shortly after another call from PICU telling us to come down and see our boy. It was very jarring to see Eli hooked up to lots of lines and a ventilator, but the relief was immense, he was ok. Eli loves his food, and in his sleep state we asked if he’d like a snack, and his little eyebrows rose up and down!

The process from PICU to going up to the ward was surprisingly fast, only a day and a half! The team in PICU is incredible and I couldn’t have thanked them enough for the constant effort put in for Eli.

 Now, trying to keep any toddler relaxed is rough, and in hospital it’s rough in another level. He’d spit his meds out, refuse to talk with any medical associated person and just wanted to get out of that room. But day by day as his strength and understanding came back, and medications minimised, things got a little easier. With only a few setbacks and a couple more procedures, we got our little man back. And after only 3 weeks to the day, we got to take him home!

We had been well informed that the next three months would be very telling, and we’d need to put the most effort in, and of course this is true!

 Blood tests, weekly hospital visits, lots of sanitising, and med taking. I’m glad to say we are all coping well thanks to the support of everyone involved before and after, we really couldn’t have done it without it!

Today Eli is thriving + some! He is an absolute champ, and I couldn’t be more proud. I love you, Eli!

Thank you IDFNZ for all you do❤️