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“At peak pandemic, my 9 month old son had a liver transplant”

“At peak pandemic, my 9 month old son had a liver transplant”

As a business owner, Tara had her life mapped out. Until her newborn son was diagnosed with Biliary Atresia.

BY Tara Ladd, 24 min READ
 

My name is Tara Ladd. I’m the founder and Creative Director of Your One and Only and earlier this year, peak pandemic, my 9 month old son had a liver transplant.

The back story

When it came to starting my own business, I had it all planned. I’d lined it up with my ten long service leave, using the years leading up to it to learn literally everything I could until that point. From there, I wanted a solid two years under my belt building the business, so that I could start planning for a family.

Right on cue, it all worked seamlessly. My pregnancy? Textbook. No morning sickness, perfect weight gain, no complications in any of the pre-natal tests – after all, I was a healthy and fit person.

In the early hours of 26 July 2019, Ari was born in the bath after four hours of active labour. No drugs, no complications, no tearing – perfect birth. A healthy 8.2 pounds and head full of red hair. All of the early screening tests came back great and we were happy and elated to begin our journey as a family of three.

After the first week, Ari lost 475g. Still within the 10% but it was in the higher part of that 10%. The following week, he put on 40g. Naturally we thought it was my breastfeeding, but my midwife Nicole had an intuition and asked me to get a UTI test for Ari. All came back normal and we were to go back weekly for weigh ins to monitor. We had switched to formula at this stage and his poo seemed to change to a pale white coloursomething that would be a huge warning sign later and something we want to shout from the rooftops to let all parents know, that this is not normal.

The following week we returned, he’d also showed signs of a cold and being a first-time mum, I naturally freaked out. While we were there our GP noticed a slight yellow ring around his belly and asked to run a precautionary blood test. Obviously, we agreed. Needless to say, that would be the first of many blood tests to follow.

The following day we received a phone call to take Ari to our local ED for an emergency paediatric review. It was there at two and a half weeks old we’d see him be cannulated for the first time and admitted for an overnight stay. Fast forward hours of tests, discussions with doctors, and the words Biliary Atresia showing up on medical reports. We were told we were going to be admitted to Westmead Children’s hospital four days later, and were equipped with a stack of medication and oral syringes.

We arrived at Westmead Children’s Hospital to have a DISIDA (dye) scan. A dye run through the body to see if bile was draining from the liver. If it didn’t drain (it didn’t), we were booked in for surgery on the Friday, two days later.

On the Thursday we were met with our surgeon Dr Albert Shun who told us that Ari had a blockage in his bile ducts. The first part of the surgery would be a biopsy which would determine whether it was a partial block or a full block. If it was a partial block, they’d administer a stent. If it were a full block, he’d officially be diagnosed with ‘Biliary Atresia’ and the Kasai Procedure would begin in the second part of the surgery. Ari was the latter. It had an equal rate of success, partial success resulting in a liver transplant and complete failure.

I kept thinking this isn’t part of the plan.

I’d literally given birth three weeks prior; I hadn’t physically or emotionally recovered from that yet. And then, how can this be happening, we are both fit and healthy parents. How can he have a chronic liver disease?

What did I do wrong?

Put simply, Biliary Atresia isn’t hereditary. They can’t figure out what causes it, and the closest thing it comes to is an auto immune disease. It occurs in 1:20,000 births and Ari just happened to be that 1.

 

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After the first surgery

After the surgery his liver drained, and all was a success. We thought that maybe we were in the clear. We did however still have protocol to follow, and were instructed to head to the ED for a mandatory 48 hours of IV antibiotics if his temp spiked above 38 degrees at any given time. So, come early November, at the same time I was scheduled to fly to Melbourne (back in the day) for a business trip, Ari spiked a temp and was admitted to hospital. We had had a couple of stays prior to this but they were only small viruses (precaution stays), but this one was different.

I was torn. We’d finally come out of the shit storm that was his first surgery only a couple of months prior, and I had only really just started to rebuild the business post maternity leave (I took 12 weeks off, and I’m so thankful for those 12 weeks). My husband assured me that he would be fine for two days and to go, with a deep sense of guilt I left Ari with my him and flew to Melbourne. I won’t lie, it was such a hard decision, especially listening to a bunch of women talking, and overhearing one say that it was the first weekend away from her one year old. And here I was, leaving my three month old in hospital. I almost turned around then and there, but I also knew that financially and emotionally I needed to be on top. Not only did I love my business and what I did, but the time away was really going to be a nice reset to what had been a really hard few months.

During that trip I tried my hardest to just forget what was going on and to focus on what was going on in front of me, and I am so thankful for those girls I travelled with who are still as amazing now as they were then. On the way back, I came straight from the airport right back to the hospital and I was met back with reality again. I relieved my husband and went from a beautiful comfy bed the night prior to a bedside recliner to be with Ari. It was this hospital stay that we would find out he had Cholangitis and his Kasai would fail.

The work up

It was confronting to know that Ari was now going to need a transplant. From here it was a matter of monitoring his levels before he could get on the list.

We’d had a rough few months leading up to February, but we were informed by our liver team that because of his rising liver levels and hospital admissions we were to begin his transplant work up. A week of blood tests, developmental tests, scans, ultrasounds, meetings with counsellors, social workers and surgeons to discuss the risks, which were incredibly confronting.

The day before we were to be listed in the weekly meeting, Ari’s temp skyrocketed to 39. A side effect of Biliary Atresia is Ascites, fluid build-up in the abdomen alongside inflamed other organs like his spleen. We watched as his stomach ballooned and his genitals became so swollen it made me so upset. We were informed that he’d developed two hernias which would now need to be sewn up when they were to do his transplant surgery, not sooner due to the risk of him bleeding out (liver controls clotting). The following week he was officially listed.

Cue COVID-19

March rolled around and the rising concern around COVID-19 began. The hospitals had temperature checks and protocols. Hospital stays now had a one parent minimum, and work build up was becoming increasingly hard. I was still rebuilding my business post maternity leave while getting smacked with a pandemic. The added stress of keeping not only myself employed but my staff, also provided additional stress to the current situation. Add to that the closure of the gyms and being an extrovert, I noticed the smallest things start to hinder my mental health. I had people asking me how Ari was (naturally), but I felt myself thinking, ‘ASK ME HOW I AM!’. My husband and I were going through a lot, trying to manage work via a hospital bed, while talking with doctors and keeping Ari entertained (which was proving to be quite hard). Our relationship had become an exchange of how Ari was doing, and we were both feeling down.

Elective surgeries were also brought to a halt and while him needing surgery was important, it wasn’t life threatening at that time (some BA kids have feeding tubes and can be hospitalised for weeks and months waiting for surgery). Transplants were a little up in the air, and with COVID-19 running rampant, they weren’t transplanting as often and taking huge precautions when doing so. It was here that I discussed being a live donor, but my liver nurse told me to wait it out just a little bit longer to see. I was thankful for that advice because two weeks later we got the call.

Getting the call

In May, we received a phone call that would change our lives. It was around 4:30pm and a random mobile number flashed up on my screen. When I picked it up I heard, “Hi is this Ari’s mum? I’m calling from the liver transplantation department.” I scrambled to put my phone on loudspeaker so my husband could hear. “We have a liver for Ari,” he said.

It didn’t matter how many times I’d visualised how that day would pan out, but needless to say it happened at the most perfect time. A friend was over and the car tank was full because the day before I had thought, ‘what if?’ Our bags were packed.

It’s not like the movies, the surgery was planned for 11:30am the next day, but we needed to head to Westmead Kids to prep. I found myself running around the house collecting the things we needed while making calls to my family to let them know it was time. My friend took my house keys and took care of everything at home while we made our way to the hospital, for the tenth time since Ari was born.

The trip to the hospital was surreal – it felt like giving birth again. Nerves and excitement – fear for the unknown. It was dark with not many cars on the road (thanks COVID) and I remember crying. For the opportunity that now sat in front of us and the sadness I felt for the donor and their family at the same time.

We arrived at the hospital to standard COVID regulations. Ari was the first transplanted liver patient during the pandemic that wasn’t a controlled surgery (living donor), so the normal protocol was a little up in the air. Given the seriousness of the situation, they allowed my husband and I to both to stay with Ari for a while before my husband left to go home. Remember that one parent rule? Well that would prove to be difficult in the weeks to follow.

Ari needed to fast from 5am, so naturally he ate at 4am and was screaming the house down by 10am, only for us to be told the surgery had been delayed for an hour. Nothing like a screaming baby and delayed surgery to add to the uncontrolled emotions. As usual we were met with amazing doctors, nurses and anaesthetists. “OMG, look at his hair, where did it come from?” and “look how happy he is!” were standard responses to literally every person who saw him.

The time came to take him in and I found my heart thumping out of my chest. The emotions I felt at that time I’ve never felt in my life, and I can’t tell you what they were or what I was feeling, even today. As we said goodbye to daddy, I carried Ari into the operating room, placed him down on the table which was like a heated air mattress, and he started to cry. We had Shimmy Shake from The Wiggles going to put him in his happy place and held his hand as he fell asleep.

As I walked out with the nurse assisting me, I broke down into tears. She instantly assured me that the surgeons were some of the best in the world and I let her talk, but that wasn’t why I was crying, I knew that. It was a release of everything that we had been through up until that point and that this could potentially be the beginning of a normal life.

We made our way downstairs and waited. My husband went for a run to clear his head and I literally sat there staring at a wall. They told us to leave, get dinner and not worry (seriously though who wouldn’t), but we did. Eleven excruciating hours later we got the call, just shy of midnight, to say that the surgery was a success and his new liver was already working. We flew out of bed and made our way up to see him for the first time, all tubed up, stapled, but transplanted. We spoke with his surgeon – Dr Gordon Thomas. Someone who will always be immensely loved and respected in our house.

Three days after he surgery he came out of ICU and on to the normal ward. Four days later, the yellow started draining from his skin and all pain relief stopped. After five days, he sat up unassisted for the first time, because he no longer had an inflamed liver and spleen. As days went by he rapidly improved. Central lines out, drains out, normal food consumed because HELLO new liver, let’s absorb some fat!

He went from the 10th percentile to the 65th in just ten weeks. He looked like a completely different kid.

I can’t believe that I ran my own business (including a three day live virtual event to assist businesses during COVID) by a hospital bed while dealing with a sick child post-transplant.

The aftermath

Believe it or not, the business actually THRIVED during this time. We had huge clients coming through the door because they now had time to invest, and I was doing my best to keep them, deal with Ari, manage the one parent stay interchange, remain strong and deal with my own mental health.

I don’t think you need me to tell you, but it was bloody hard. The first few weeks once we were home were the hardest. We weren’t in hospital anymore. We had to deal with administering all the medications on our own and these ones a lot more serious than his first round. This involved a cytotoxic immunosuppressant which prevented his liver from rejecting. One mil out can cause issues, which was a little confronting.

Work began to really get me. Ari wasn’t able to see anyone but us for six weeks, so we were primary care givers until he could see his grandparents again. I was playing mum all day and then I’d work all night to catch up, because clients that had been booked in May were pushed into an already booked out April. I found myself struggling to catch up – I was redlining.

Those initial six weeks went by and life has eventually sorted itself out and I’m happy to say that we’re really starting to feel like a normal family. I signed up to Business Club, I have joined a monthly mastermind with two great business mates, I’ve locked in some great retainer clients which will secure our bottom line, and I have hired a studio manager.

You know what they say about needing to hit the bottom to know how to rise to the top? I feel like I’m there. But the one thing that keeps me grounded is the constant reminder of the families we met along the way who are dealing with things that are way worse than what we went through. Perspective always.

A plea from me

My goal is to help our liver team at Westmead Kids raise funds for equipment needed for transplantation. It was this team that funded our stay while Ari was in hospital. They provide other families, care, music therapy, assistance and support. It’s something so close to our hearts and we’d love it if you could help us with a small donation to Ari’s case for Leaping Livers. We’re so thankful for their support to us during our darkest time.

On top of that, 26 July to 2 August is Donate Life Week. If you aren’t on the donor list, please consider it. And if you are, please let loved ones know that this is what you’d like to do. Donation saved Ari’s life and we will be forever grateful.

Lastly, if you’re a new mum, or know someone who is, please take note of a child with a yellow complexion in their skin and eyes, and also take note of pale stools. These are key signs of Biliary Atresia and the earlier it’s picked up, the better.

If there’s one thing that this whole thing has taught me, it’s resilience.

So, World, come at me.

 
 
 
 
 
 
 

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