Before graduating with first class honours, student Sarah took time out from her studies to become a live liver donor to save the life of her baby son
Sarah O’Neill, from Belfast, tells her amazing story to Alison Fleming
An inspirational Belfast mum who became a live liver donor to save the life of her baby son, will be graduating today along with fellow students from Ulster University. Sarah O’Neill (26) clinched a first class honours degree in Leisure and Event Management, less than two years after undergoing the surgery.
Sarah, from Blacks Road, gave birth to her son Laurence in September 2014, after she finished the second year of her studies, but when her baby boy was just a few days old he was diagnosed with a rare, life-threatening condition.
“Laurence was born on the Thursday,” explains Sarah. “We got him home and I was breastfeeding him, but he wasn’t taking it and so I decided to give him a bottle. He was vomiting after every feed, so I contacted the hospital for advice and was told to give it time.
“I was very upset because I knew there was something wrong with him, but everyone thought I was being a new mum and that he was fine.
“It wasn’t until the Saturday morning when the midwife came and she agreed that something wasn’t right. He was taken to the Royal Victoria Hospital, Belfast, and they were fantastic.”
Laurence was diagnosed with Citrullinemia, a rare urea cycle disorder which affects around one in every 57,000 people worldwide. The condition causes ammonia and other toxic substances to accumulate in the blood, which, if not treated, can be fatal.
Crucially, the doctors at the Royal had been given training the week before Laurence was born on picking up on urea cycle disorders, so it was fresh in their minds when he was admitted.
“They tested his ammonia levels early on, spotting the condition straight away, when usually it can be a while before diagnosis, meaning ammonia builds up in the brain, leading to severe brain damage.
“Laurence was so small that he wasn’t able to get the treatment he needed in Belfast, so at just four days old he was transferred to Great Ormond Street Hospital in London.”
Because of the medical equipment required to transport Laurence, his mum and dad, Laurence (27), weren’t able to travel with him to the London hospital to get the treatment he needed.
Once he arrived in Great Ormond Street, Laurence was given dialysis to clean the toxins out of his blood, and scavenger drugs to mop up the excess ammonia caused by his condition.
“We were there for two weeks,” recalls Sarah. “And when we got to the hospital we felt a sense of relief because we knew he would be okay. Looking back, it seems unreal, and as if we’re looking at someone else’s story. We were running on autopilot.”
The young family came back to Belfast, where Laurence was admitted to the Royal again, this time for three weeks. He was on intravenous medication initially, before being weaned on to oral medication. The treatment was hard on his tiny stomach, making him vomit, but he needed the drugs to survive.
The next year was a blur of hospital admissions, as Sarah and her husband worked to manage their son’s condition. The medication he needed to survive made him sick, leaving his parents anxious that his ammonia levels could be rising again.
“I was looking at my tiny baby who is sleepy, who’s vomiting, and having to take him to A&E for blood tests because ammonia levels can rise in minutes, so he needed to be on IV medication and his protein intake stopped.
“He was having his bloods checked every week, but we were continually in and out of A&E. In the first year of his life he had his blood taken at least 30 times, and he was in hospital every month with something.
“Any illness, such as a cold or even teething, could cause Laurence’s ammonia to rise at a rapid rate and there was no way we could test his blood at home. It was so hard to have to look at our son and not know if this horrible toxin was building up, it was impossible to know.” When Laurence was six months old, his parents asked medical experts about a liver transplant which, although curative, would mean he’d have to take medication for the rest of his life.
Wanting the very best for their young son, they weighed up the options of the possible risk of brain damage from rising ammonia levels, or giving their son the chance to lead a relatively normal life.
Having made the decision to go ahead with the surgery, they were faced with a year-long wait for a liver transplant. Unwilling to delay any treatment that could help their son, both Sarah and Laurence senior were both tested for compatibility.
Sarah was found to be the most suitable match because of her size, and so just months after that initial assessment, she underwent a nine-hour operation to remove a lobe from her liver to be transplanted into Laurence, who had just had his first birthday.
“I was very emotional when they woke me up, and I had to ask if it had happened. The doctor told me that he was looking good, and that my liver was perfect. Everything was going to plan.
“Later that evening, we were told that Laurence was in ICU and everything was working, with the consultants really happy with how it had gone.”
Although there was no physical difference in their son, life changed dramatically for the family post-transplant.
Sarah and Laurence no longer had to weigh out their son’s food, or waken him for feeds or medicine during the night.
“We were a lot more relaxed, as prior to the transplant I was afraid to take him out to places where there were other children in case he picked up a bug, which could cause his ammonia levels to rise. Now he has a normal life.
“He’s just like any other toddler and can eat whatever he wants, which is fantastic. It’s such a difference from when we were weaning him and I was only able to give him certain foods, with everything having to be weighed and counted.
“He’s three in September, and he loves anything to do with cars. That’s his first word in the morning. My mum and dad live on a farm, and he loves to go and see the animals and get a go in the tractor.”
With Laurence’s successful treatment, Sarah faced the agonising decision as to whether she would return to her studies, having taken two years out. Living in Belfast and studying in Coleraine would be a challenge for family life, but Sarah knew it was something she wanted to finish.
With the support of family and her course supervisors, Sarah secured a prestigious first class honours degree in Leisure and Event Management, and is now looking for employment within the sector.
“The reason I decided to do the course is because of the major events that Northern Ireland has been attracting over the past five years and I thought there’d be great opportunities to progress in a career,” she explains.
“Northern Ireland is holding its own against other cities as an events host destination for major events, so it’s an exciting time to be entering the industry.
“I am so chuffed to have got a first, but I did work hard. Before, I maybe wouldn’t have worked so much, but since I had Laurence and everything that we went through I just wanted to get the first, and even told my studies adviser that I wouldn’t be happy if I didn’t get one.”
Despite everything she’s been through, and the hurdles she’s overcome to get her education, Sarah doesn’t believe that she’s an inspiration, saying she just did what any mother would do for their child.
“I just think I went through the challenges like other people would have done,” she says. “It’s just how anyone else would have dealt with it.
“There’ll probably be tears at my graduation, but I’m just glad I finished it. Now I just want to get a job and live a normal life and be a normal mum.”
For more details contact Northern Ireland Transplant Association, 134c Warren Road, Donaghadee, BT21 0PQ, tel: 028 9188 2992 or visit nitransplant.org/