Help support Judah's recovery from PTLD

Judah was born with Alagille syndrome, a rare and complex genetic disorder that can lead to many serious medical issues. As a result, at just three months old, Judah was diagnosed with liver failure and required an urgent liver transplant in order to save his life, which was made complicated by his very young age and small size. While a transplant was achieved shortly after his first birthday, the process has been beset by complications, both leading up to and following the transplant, and, a few months ago, it was discovered that Judah had developed post-transplant lymphoproliferative disorder (PTLD), a form of post-transplant cancer/lymphoma.

Judah’s health continues to be a complex issue requiring continuous treatment and regular monitoring, much of which is not covered by medical aid. On top of that, Judah’s transplant and continued treatment have only been possible at a specialist medical centre in Johannesburg, around 1000 km away from their family home in Port Elizabeth, and has required Judah and his family to relocate for the foreseeable future, with the costs for this having to be paid by the family themselves.

The ongoing situation has placed an immense financial strain on Judah’s family; the timeline and scope of treatment required for Judah’s recovery is indeterminate, making medical bills an unpredictable but inevitable ongoing cost, and the relocation has made business more difficult to conduct and led to an ongoing negative impact on the family’s income.

In order to continue to fund the life-saving treatment that Judah desperately needs, the family have already had to sell their family home in Port Elizabeth, as well as one of their vehicles, amongst many other items.

Any and all donations made go straight toward our family’s living costs & medical bills which aren’t covered by medical aid. Any amount, no matter the size, is immensely appreciated by our family and helps us take another step on what has been the most difficult journey of our lives.

It is impossible to fully capture everything that Judah and his family have endured over the course of Judah’s life so far in just a few paragraphs; below is a fuller version of Judah's story as written and shared by Judah’s father, Glyn Bradfield:

Judah's Birth

On the 1st September 2021, our fearless and courageous baby boy, Judah Leo Bradfield, was born; three weeks early via emergency C-section… A couple of the main reasons for the emergency comprised of the knotted umbilical cord which was wrapped around his neck, this meant his oxygen supply was massively hindered; not only this but my wife, Juanita, was found to have a uterine window, this meant a severe rupture was very likely on the cards – from the contractions – so the doctors had to act very swiftly!

Due to heavy Covid-19 restrictions, Juanita had to deliver Judah without me present – I only got to meet our “Little Lion” once they came out of theatre a few hours later. My immediate thought when seeing him for the first time was: “He is tiny!” His birth weight was barely over 2 kg and his fingers, toes and lips were very blue – all indications of a lack of oxygen supply.

This aside however, we were so grateful for his safe arrival – it was a rough pregnancy to say the least. Juanita bled for a solid 9 days in the 6 – 7 week gestation period and a few weeks later, they picked up that he had fluid on the brain: suffice it to say, the doctors were not confident he was going to actually make it but God had other plans…

Three-month Checkup

Fast forward to Judah’s 3 month post-birth check-up (Wed 8 Dec 2021) and all was looking good: the doctor was happy that Judah was hitting his growth milestones, as he was gaining weight well (more than triple his birth weight at this stage) and his length was increasing however; the only thing amiss was that his sclerae (whites of his eyes) were slightly yellow and his faeces was often a very pale white/grey colour.

These findings caused the doctor to have Judah admitted to hospital the very next day for a couple of days. After much poking, prodding, scans and tests, the results were pointing toward a failing liver; however, to make certain, we were instructed to urgently fly from Port Elizabeth to Johannesburg (1000 km away) to visit the highly specialised Wits Donald Gordon Medical Centre.

Another week of testing and further scans and biopsies etc. confirmed the worst: our boy was in liver failure and the paediatric team explained he would require a liver transplant as soon as possible or it would be fatal for him.

Preparing for the Liver Transplant

Before he could have the transplant, we needed to find a suitable donor. It was explained to us that live liver transplants were seeing better post-op outcomes than making use of cadaver livers, so we agreed to go this route. Unfortunately, neither my wife nor I were a match for him. We were also told that he needed to get to a minimum weight of 10 kg before the transplant could take place; this minimum weight would greatly increase his chances of a positive post-op outcome.

The former issue was solved by one of our long-time friends (over 15 years) named Ashleigh Darne – we were and still are, in utter awe of her love and selflessness. The latter issue however, proved very difficult, as a malfunctioning liver makes it extremely arduous for a person to gain weight. We were very grateful that my wife was (and still is) breast-feeding, as this helped tremendously in getting some quality nutrition into him and then further to that, her creative ways of force-feeding him were imperative in helping him achieve his optimal weight.

Transplant and Recovery

After many missed dates due to multiple infections, Judah finally received his second chance at life on the 18th October 2022. This incredibly complex and very risky operation was successful however, the recovery has been extremely challenging in so many aspects – post-op, Judah spent a total of 23 days in the transplant ICU.

I will try and summarise the major events as succinctly as possible:

• He had a number of hair-raising incidents, none more so than his cardiac arrest and subsequent resuscitation the very next morning after surgery... jeepers, that was scary! Long story short: he woke up about 6 hours earlier than any of the doctors thought he would based on the amount of sedation he had received post-op, for his size and weight... unbeknownst to them, he's always had this tendency of metabolising medication very quickly and in the early hours of the morning, he woke up and self-extubated which caused a lot of airway damage and subsequent complications a couple hours later... thank the Good Lord that the head of the transplant ICU was there in the early hours of the morning. He acted extremely swiftly and efficiently to get Judah's airways open and oxygen flowing again – beyond thankful to him.

• The remaining 22 days of Judah-man's ICU stay comprised of things like: extreme swelling throughout his body, due to massive fluid retention; a bacterial infection contracted through the CV line in his jugular which caused ridiculously high temperatures and dangerous tachycardia's; swollen airways which prevented a successful planned-extubation which then led to a theatre appointment with a specialist ENT, to check if he needed a tracheostomy... so grateful the ENT gave the green light for no trachy and to plan another extubation in theatre, which was successful.

• After 13 days on the ventilator post-op, our boykers was breathing fully on his own!! Words cannot express how elated Juanita and I were when he reached this point. It meant most of the pipes could come out and he would no longer need to be heavily sedated and pumped with paralytics, which allowed us to interact with him and boy, did his beautiful personality and quirky character come out strong and fast again!

• Other events in this time included: Judah needing a chest drain (pulmonary effusion) to alleviate build-up of fluid on his lungs; strong blood pressure medication to decrease his high blood pressure; an everyday struggle after he was awake was trying to distract him from pulling on all his cables and chords...

Eventually, after 23 days in ICU, he was discharged upstairs into the transplant ward. A private room with his own en-suite and 3 x meals per day. With Judah being such an explorer, he got very agitated being in those four walls on a daily basis, so visiting the play room in the ward as well as daily physio sessions, were the highlights of his days.

Post-Transplant Life and Complications

On Friday 18th November 2022, after 8 x days in the ward, Judah was discharged from the hospital completely. Words cannot explain how elated we were! We had the most incredible weekend out of hospital together. Judah hadn't been outside in 31 x days straight, at this point. So you can imagine how excited he was!

Unfortunately, our excitement was short-lived, as when we took him for blood draws on the Monday 21 November 2022, the results revealed extremely elevated liver enzyme levels, which meant one of two things:

1. A blockage in his main bile duct

2. His body rejecting his new liver

Tuesday's ultrasound revealed that it was the former. This was incredibly bumming as it meant he needed more surgery however, we were extremely thankful that it wasn't his body rejecting his new liver.

Surgery commenced on Wednesday 23 November 2022. Judah had a PCT (percutaneous transhepatic cholangiography) and then he had a PTBD (percutaneous transhepatic biliary drainage) which means they put a stent in the affected duct and then blow up the balloon to improve the passageway to allow bile to flow more freely and drain out.

During this entire process, we couldn’t get the area wet and the stitches were very temperamental so there was a very real concern that it would dislodge or tear away. Again, my wife’s expertise in managing a boisterous toddler during this time was nothing short of exceptional. She would clean and disinfect the area daily and change the dressing a couple of times a week – she is a super mom of note!!

Finally, after six months – during which the drain had been changed and dilated five times – the drain was removed entirely on 24 May 2023.

Post-Transplant Lymphoproliferative Disorder

Just a week after Judah’s drain – which was in for 6 months – came out, he contracted an Upper Respiratory Tract Infection and had swollen glands all over his body. This concerned Judah’s hepatologist and he was admitted to hospital for a colonoscopy, gastroscopy, bone marrow biopsy, tonsillectomy, adenoidectomy and a bunch of blood tests as they suspected he may have Post-transplant Lymphoproliferative Disorder (PTLD) which is a type of lymphoma cancer brought on by the immunosuppressant medication he has been on, since the transplant.

Our worst fears were unfortunately confirmed when all the test results returned confirming that he did indeed have PTLD.

The treatment plan for this was a course of chemotherapy to stop the abnormal cells from growing. The doctors ceased with the immunosuppressant medication (called Prograf) and he was put on daily Prednisone, instead.

Family and Financial Impacts

Besides the constant uncertainty on time frames and having the ability to plan for future endeavours taken away from us, one of the toughest aspects of this journey has been the massive costs associated with being in JHB for the past eight months combined with the plethora of medical bills which just keep coming.

In December 2022, we were hugely fortunate to secure a rental property from close family friends, here in JHB: a safe & secure 2 x bedroom townhouse in the Bryanston area. They very kindly furnished it for us and allowed us to rent from them on a month-to-month basis – this solved a huge dilemma for us as it was extremely difficult to commit to a lease period through a standard rental agency.

This then allowed us to bring our other three children up to JHB – up to this point, they were staying with their grandparents in PE which we were so thankful for! However, not seeing them for 58 days was absolutely heart wrenching! It was incredible to have our full family unit together again – even in a two bedroom townhouse

In February 2023, we had to give notice at our property in Port Elizabeth as Judah was experiencing complications with the drain insertion which meant we’d need to stay in JHB longer. Our 9 year old and 7 year old were starting grade 3 and grade 1 respectively, this year – we made the decision to pull them out of their schools in PE and home-school them in JHB to keep them with us.

With Judah’s PTLD diagnosis, this latest news has now further delayed our move back home to Port Elizabeth and heaped further financial strain on us, as a family.

We have sold our house and one of our vehicles and many other items to make ends meet and pay for the ever coming hospital bills. My wife is a stay-at-home-mom and I’m a 100 % commission-earning realtor – my client base is in Port Elizabeth and it’s been immensely difficult to try service listings from afar and building professional relationships here in JHB whilst my youngest son is in and out of hospital frequently, has been massively challenging.

Suffice it to say, business is tough.

Any and all donations made go straight toward our family’s living costs & medical bills which aren’t covered by medical aid. Any amount, no matter the size, is immensely appreciated by our family and helps us take another step on what has been the most difficult journey of our lives.

Thank you for reading our story and helping us, help our son.

Much love,

Glyn and Juanita Bradfield