25 November 2022

Billy’s remarkable journey

Mum, Laura, had a textbook pregnancy and, although arriving a little late via emergency caesarean section, Billy was born on 6 October 2017 with no obvious complications and sent home with his family after 48 hours.

“Alec and I were overjoyed when Billy was born. He gave us a little fright at the beginning with the emergency c-section, but everything seemed perfect and we were excited to get home and be with our family.” 

Billy showed signs of jaundice, a yellowing of the skin, from birth and he was admitted to Southampton Children’s Hospital. After two days of assessments doctors confirmed that Billy had the congenital condition Biliary Atresia.

Biliary Atresia is a blockage in the ducts [tubes] that carry bile from the liver to the gallbladder. If left untreated, many young patients would not live past their first years of life and often a liver transplant is the only option for survival.

In a blink of an eye your world changes. All you hear is survival statistics and talk of transplants. You don’t know which way to turn. I think I’ve probably tried to block a lot of it out, but it was an extremely traumatic time for all of us.”

At just a month old, Billy was transferred to Kings College Hospital in London where he had an operation to replace the blocked bile duct with a segment of his own small intestine.

Following the operation, Billy was closely monitored with frequent blood tests and fed with specialised milk formulas through tubes in his nose.

Unfortunately, Billy continued to remain jaundiced, a clear sign that the operation wasn’t the success that doctors had hoped, and that his liver function was quickly declining.

His failing liver was also causing massive fluid collections in his stomach which was causing severe breathing difficulties. These fluid collections had to be frequently removed to relieve pressure and help him breathe.

“We had a few weeks of Billy seeming well but In December 2017 he became incredibly poorly with a sickness bug. Because of his already weakened immune system he couldn’t fight off he infection, so he was admitted to the Paediatric Intensive Care Unit at Southampton Children’s Hospital.

We thought he would be in for a few days, but he ended up staying in hospital for months.”

In early 2018, Billy’s body started to give up and he could no longer keep the constant infections at bay, so the decision was made to register Billy on the national transplant list.

For a further five months, Billy continued to battle daily infections and complications, but in summer 2018, whilst anxiously awaiting a donor liver, his parents received the call that no parent ever wants to receive.

“It was late at night, and we were staying close to the hospital. The phone rang and my heart just stopped. We were told to get to the ward as quickly as possible as Billy had stopped breathing. That horrible feeling of ‘it’s the end’ floated over me and you blame yourself for not being there for him.”

Thanks to quick thinking medics, doctors revived Billy and four weeks later, in late August, Billy was transferred to Kings College London where is underwent a liver transplant. The transplant was a deemed a success and after two weeks Billy returned home where he started six months of isolation and recovery.

Despite suffering from a few infections, Billy’s new liver seemed to be working well, but in April 2019 his parents woke in the night to Billy in severe distress with inconsolable itching and his skin bright yellow again.

He was rushed back to Southampton Children’s Hospital where tests discovered that Billy had a blockage in his ducts.

“You start to realise that your journey is never really over, you’re constantly holding your breath wondering what might happen next. All that went through our minds is ‘please not a second transplant’.

Billy had had four major operations in the first year of his life and we just didn’t want him to have to endure anymore.

Billy was re-admitted to Kings College London where he underwent further operations to reconstruct his bile ducts.

Once again, Billy returned home and the family were hopeful that Billy was finally on the road to a happy and normal life.

 

“In late 2019, Billy had a series of chest infections, so we were in Southampton Children’s Hospital over Christmas. We only live a few miles away, so the staff were keen to get him home so we could enjoy our first family Christmas together.

We had to pop back to the hospital on Christmas Day for vital medical, and Billy was delighted that he had a bed full of beautiful presents from Santa! The hospital tried to make his day special, and he was greeted by staff in festive dress. It made his day and was so unexpected!”

However, in May 2020 Billy was back at Southampton Children’s Hospital after he started swelling up rapidly and suffering what was thought to be an anaphylactic shock.

For five days Billy’s body continued to swell. Due to his severe breathing difficulties, Billy was transferred to PICU and put to sleep through a medically induced coma – where his breathing is artificially supported on the ventilator.

Tests continued and in late his parents fear that their nightmare journey hadn’t ended were confirmed. Billy was diagnosed with Stage 3 Post-transplant Lymphoproliferative Disorder (PTLD) cancer.

PTLD cancer can develop when transplant patients, who are taking immunosuppressive drugs to prevent the rejection of the transplanted organ, are more susceptible to certain viruses.

The treatment is to cure the cancer while also trying to protect the transplanted organ. So, the decision was made to withdraw his immunosuppression drugs, which were protecting his liver from rejection, and treat the cancer.

“When you’re a hospital mum, the diagnosis isn’t the scary part, it’s if they can treat it. You start to ask yourself how strong is your child? Will he make it through and will he survive?”

Luckily, Billy’s liver continued to thrive without the immunosuppression drugs and after four gruelling rounds of chemotherapy, he returned home in August 2020 with his cancer in remission.

“Billy has been through a lot and because of this he hasn’t hit all of his milestones. He was unable to sit up, smile or talk like other children his age. He could only say a few words up until the beginning of this year, when he was four years old. He’s doing really well though and we’re so proud of him.”

Although his liver is functioning well and he is cancer free, Billy’s journey isn’t over yet. He continues to suffer from secondary conditions related to his diagnosis and is an outpatient at many specialist clinics at Southampton Children’s Hospital, including our therapy and allergy services.

“We are incredibly lucky to have so many talented specialists under one roof at Southampton Children’s Hospital, often all working together at the same time for the same outcome.

 Every single one has bent over backwards for us and that is something that we will never forget. The whole team were a big part of Billy’s life, and without them, our time in hospital would have been very different.”

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Making patients smile this Christmas

Help us sprinkle smiles, laughter, and happiness across our hospital this Christmas. You can help make it happen!

Christmas should be about spending special time with family at home, seeing children getting excited, watching them unwrap presents, and spending the big day celebrating. Sadly, for many children in hospital, this just won’t happen.

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