Today Julie Maguire is celebrating an 18th birthday with a twist. When she was just 13, Julie was at death’s door, suffering from a rare liver disorder.
But her life changed dramatically 18 years ago when she had a liver transplant.
Had it not been for that operation, then Julie would not be here today.
The 31-year-old of The Ridings, Gatcombe Park, Hilsea, says: ‘It’s amazing to think that 18 years ago today I was given the gift of life.
‘I always celebrate my liver birthday. The transplant absolutely saved my life – I literally had about a week to live.’
At 18 months old, Julie had been diagnosed with a rare condition called cryptogenic cirrhosis.
For an unknown reason, the condition causes tumours on the liver, the stomach to swell, and Julie also suffered from jaundice.
For Julie, a transplant was the only hope of life.
Sadly, for her parents Maggie and Peter Maguire, who then lived in Teignmouth Road, Gosport, they had already seen the effects of the disease.
Julie’s older sister Joanne had suffered from the same condition and died aged seven.
Maggie, 64, says: ‘It was a gene my husband and I carried and, although it didn’t affect us, it affected both of my daughters.
‘When Joanne was born she did not thrive and was taken to Great Ormond Street Hospital and the then Royal Haslar Hospital in Gosport.
‘There was no hope for a liver transplant for children then.
‘They were only being done in America and we couldn’t afford to go over there as I wasn’t working and my husband worked in the dockyard.
‘Joanne died when she was seven.
‘It was such a rare condition and the chances of having a second child with the same condition were also very rare. That’s what we were told by doctors.
‘It was a complete twist that Julie was taken ill.
‘The doctors took some liver tests and, lo and behold, it was the same.
‘We were told to take her home from hospital and to enjoy her while we could, and that she was never going to see school age.’
Julie’s condition was not as aggressive as her sister’s and she could lead a relatively active, live, such as going on a family holiday to Disneyland in Florida.
Eventually, Julie went to Brune Park School, in Gosport.
Then, in 1984 there was hope. Ben Hardwick became the youngest liver transplant patient, aged just two.
The operation took place at Addenbrooke’s Hospital, in Cambridge, which is also where Julie was having regular check-ups as it was the closest liver specialist hospital.
‘Julie was put on a waiting list as she wasn’t ill enough to have one straight away,’ remembers Maggie.
‘Just before her 13th birthday we took her to have a scan and that’s when it all went wrong.
‘Joanne’s condition had been more aggressive. Julie’s condition didn’t become aggressive until she turned 12.’
Julie recalls how routine tests at the hospital suddenly took a turn for the worse.
She says: ‘I went to Addenbrooke’s Hospital, every three months and I remember how they did my scan.
‘Then the doctor said he would just be a moment, and then came back with what felt like about 20 doctors.
‘I knew something wasn’t right when that happened.
‘That’s when I was getting really ill and people were making more of a fuss around me.
‘I didn’t know then how close I was to dying then though.
‘I didn’t know I was at death’s door, I remember just wanting to get better so I could go back to school.’
But for her family, it was a terrifying time.
Maggie says: ‘I was reliving an absolute nightmare.
‘I went through a stage where I thought “don’t attach yourself to her” because I was scared of losing her like I lost my first daughter.
‘It’s a living nightmare and we used to stay awake thinking whether it was going to happen to her.’
On New Year’s Day in 1995, the family got the good news they were desperately hoping to hear – a suitable liver donor had been found.
Julie says: ‘I remember it being New Year’s Day and the beeper went off.
‘My dad went straight to the phone and called the hospital. I had just been sat there and then the next thing I knew we left everything at home and got into the car.
‘We left the house at 10pm and the weather was really bad.
‘The liver had been flown in from Scotland and was a 17-year-old girl’s who had died in a road traffic accident.
‘That’s all we know about her.
‘We wrote a letter to the family to thank them and that’s the only contact we’ve ever had with them.
‘I remember a nurse plaiting my hair and I said I wanted to walk to the operating theatre and didn’t want to be pushed in a bed.’
The operation took place at 7am on January 2 and lasted 10 hours. After that Julie spent time on a life-support machine.
Three days later her body rejected the liver, so Julie was back on the operating theatre so surgeons could fix this.
Then Julie’s parents had to make the tough choice about whether or not Julie should have chemotherapy and radiotherapy.
‘Having seen the effects of that on Joanne, we didn’t want to put Julie through it,’ says Maggie.
‘We had doctors telling us we should, but Joanne had been so weak that we didn’t want to see Julie in the same way.
‘We thought if it wasn’t meant to be, that she wasn’t going to survive the transplant then so be it.
‘Two years later she got the all clear and we thank God we made the right decision.
‘Julie was back at school in May of the same year.’
As Julie concentrated on getting better and putting on weight, she did not notice the impact of her new liver straight away.
She says: ‘Soon after, I noticed the jaundice went and the puffiness around my stomach and I just started to feel normal.
‘I had more energy, I wasn’t as tired as I had been and it felt like I had been born again.
‘It doesn’t enter my mind now that I’ve had a transplant. I can eat and drink alcohol like normal – not that I drink a lot anyway.
‘I wish I could meet the family of the girl now and that they could see me now to see what a difference it has made to me.’
Julie went on to study childcare at St Vincent College in Gosport, before working in the nursery inside Addenbrooke’s.
She also spent time talking to 17 to 18-year-olds about to have liver transplants.
Now Julie works at Busybees Nursery, in Northarbour.
Her story was covered by national media, and was also followed by The News.
Between 1985 and 1995, the family raised £1m through fundraising events in the Portsmouth and Gosport areas, which went to Addenbrooke’s to buy specialist equipment.
January is Love Your Liver month, which is a health awareness campaign run by the British Liver Trust.
Now Julie hopes her story will highlight that not all liver transplant patients are those with alcohol problems, and urges people to carry organ donor cards.
She says: ‘If I could get any message across, it would be to say not all people with liver transplants should be tarred with the same brush.
‘I was born with this condition and there was nothing I could do about it.
‘The transplant saved my life, and I would never abuse my liver. I would also urge people to sign the organ donor register as it can take someone from being at death’s door to becoming a normal person – and that’s absolutely amazing.
‘You can’t thank the donor enough really.
‘I’m proud of myself for getting this far and not wasting a moment.’
For more information on becoming an organ donor, go to organdonation.nhs.uk.
AN EXTREMELY RARE CONDITION
A LIVER specialist in Portsmouth is reiterating Julie Maguire’s message.
Richard Aspinall is a consultant hepatologist at Queen Alexandra Hospital, Cosham.
He says: ‘Julie’s case was a very unusual one.
‘And, in actual fact, 18 years ago I was working in the Addenbrooke’s Hospital, but with adult liver patients rather than children.
‘It’s one of the best units in the country for this and it’s fantastic they were able to give Julie such an opportunity in life.
‘Julie had a condition called cryptogenic cirrhosis, which is a rather complicated way of saying “unknown cause”.
‘This also led her to have cancerous tumours on her liver.
‘It’s something genetic and, unfortunately for Julie, it was a transplant that was needed to save her life.
‘It’s very rare that children have this condition and it must have been tough for the family to go through it twice.
‘There are only about 100 cases of children having liver problems in the UK – that puts these children in a very rare group. In adults it’s about 700 cases.’
Mr Aspinall works with adults that have liver problems.
‘In Portsmouth, there are a lot of problems with alcohol and the liver, but if you look at transplant waiting lists, it’s not the most common reason why someone will have one,’ he says.
‘If people are still actively drinking, but have advanced liver disease, then they wouldn’t automatically be eligible for a transplant.
‘It’s more for people like Julie or for people who have immune conditions or hepatitis C.
‘It’s important to remember there are lots of reasons why people might have liver disease, but unfortunately it does get stigmatised with alcohol.
‘A really positive message from Julie’s story is the true benefits of an altruistic donation.
‘The family of the donor
girl will have been going through such a negative experience, yet from it they gave someone else the chance of life.
‘And thanks to that amazing gift, Julie has managed to lead a healthy life.
‘That’s such a great thing to be thankful for, as someone else’s generosity gave Julie the gift of life.’