Heartbroken Irvine family speak out after son Leo, 2, dies having spent two months on "urgent" heart transplant list

Little Leo Williamson had spent two months on the “urgent” transplant list, but tragically lost his fight for life last month - nine months after being given two weeks to live.

Today, his parents Sharlene, 37, and Gary, 38, spoke of their grief at losing their precious little boy and their frustration at the NHS’s “postcode lottery” transplant list.

Gary told the Times: “We honestly believe whether or not you get a transplant in Leo’s weight category is down to where you live and who is your referring centre for transplant.

“It’s a postcode lottery. The whole time Leo was in heart failure we fought desperately to get him in to Newcastle Freeman Hospital, only to be turned down time and again.

“Despite Leo being number one on the national urgent list for two months before he passed away and the child in most need of a heart and specialist care in his category in the whole of Britain, unbelievably they said they didn’t have a bed for him.

“I find that absolutely incredible.”

Leo and twin brother Kai were born on September 2, 2013 and a scan soon afterwards confirmed what had been picked up at Sharlene’s routine 20-week antenatal scan when the boys were still in the womb - Leo had Hypoplastic Left Heart Syndrome - meaning only half his heart was functioning.

At just two-weeks-old Leo underwent the first of three planned open heart surgeries at Glasgow’s Royal Hospital for Children.

The operation was a success and Leo proved to be a little battler and was allowed home to his parents, brother Kai and big sister Lauren, 15, in Pennant Place, Montgomerie Park, just a month later.

But in January 2014 during routine tests to check pressures on Leo’s heart, a blockage was detected and medics planned to correct it during his second surgery - to be carried out when he was between four and six-months-old - with the final surgery planned for when he was around four-years-old.

Gary, who works for Rolls Royce, said: “These three palliative surgeries are planned for all suitable patients who are born with hypoplastic left heart with the hope that they allow patients to live into their teens or twenties before they will need a transplant.

“Obviously a donor heart for an adult is easier to find than for a child, so we hoped and prayed the surgeries would see him through until then.”

But the family say a series of blunders, including medics failing to notice Leo suffered a stroke and giving him an overdose of blood thinning drugs, meant the tot was seven-months-old before the family were finally given a date for the vital operation.

That date was then cancelled a further three times and Leo’s health deteriorated dramatically, prompting an anxious Gary and Sharlene to contact Boston Heart Centre in America for a second opinion.

Desperate and feeling neglected, they then wrote directly to Leo’s surgeon telling them their son was “dying in front of their eyes” and Leo finally received the second operation on June 24, 2014 when he was 10-months-old.

However it was not a complete success and surgeons were not able to correct the blockage, which at that time was classed as ‘mild’.

His parents were told if the blockage escalated to ‘moderate’ Leo would need surgery.

By November that year their worst fears were confirmed when the blockage worsened.

However Gary says, rather than Leo being closely monitored and intervention planned, he was seen at hospital just twice in eight months.

On July 8, 2015 Gary and Sharlene had noticed Leo had developed puffy legs and took him straight to hospital when doctors confirmed their worst nightmare - Leo was in heart failure caused by the blockage and had an estimated two weeks to live.

The family were now sure Leo would be moved to Newcastle Freeman and given a heart transplant if one became available, but astonishingly were still told there was not enough beds at the Freeman Hospital for Leo to have transplant assessment tests done there.

Instead the tests were carried out at Glasgow but the couple received conflicting advice from both hospitals about the next step in Leo’s care.

Gary said: “Newcastle were telling us the preferred next option was a high risk operation to be done at Glasgow in the hope to clear the blockage, but Glasgow were strongly advising against it.

“We were totally confused. These people are supposed to be giving you the best possible advice for your child.

“In the end we asked for a second opinion from Great Ormond Street, which aside from the Freeman, is the only other heart transplant centre for kids in the whole country, and they advised they would not do the operation if Leo was in their care.”

Leo did not get the surgery and Newcastle still insisted they had no room for him.

The gravely ill tot clung to life and was allowed home on an oral trial drug while the family hoped for a transplant.

After weeks of hearing nothing Gary took matters into his own hands and contacted Newcastle himself - only to be lambasted for inquiring about Leo.

He told the Times: “We were fed up and totally desperate for news so I called the transplant co-ordinator to ask what was going on and the first sentence she said to me was 'you’re actually the third person to phone me about this child'.

"I couldn’t believe it. She sounded irritated that I was even phoning, like we were a burden to them and only added to our fears that Leo was far from a priority for them.”

Newcastle finally agreed to see Leo in person at the end of September 2015 - a full two-and-a-half months after he was given two weeks to live.

However, the family were dealt another devastating blow when consultants at Newcastle told them Leo was still unlikely to receive a new heart because there were two lists - an urgent and ‘non urgent’ and, despite everything, Leo had not been classed as ‘urgent’.

By October Leo was finally listed as ‘urgent’ and back in hospital - an astonishing three months after his heart first failed.

Gary said: “If Leo qualified for the urgent list in October, he should definitely have been on it in the July when they thought he had weeks to live. We feel totally duped by the Freeman that they allowed us home on the trial drug knowing full well our son had next to no chance of finding a heart on the normal list.

“There was a full three vital months wasted while we waited for an appointment from from Newcastle. After that we heard nothing until November when Leo had deteriorated further and Glasgow asked for a bed again at Newcastle only to be told, again, that there was none.

"We asked for a meeting with Newcastle and met with them in January this year where they actually boasted to me that they had just carried out a record number of transplants and that Leo was now top of the list.

“I asked again for him to be moved into the Freeman as a patient until a heart became available and they just refused and said their only job was to find a heart for Leo, nothing else.”

Almost two months to the day of Gary’s meeting with the Newcastle Freeman Hospital, little Leo passed away on March 5 having never received a new heart.

Two days before he died, the tiny tot suffered a cardiac arrest and the Newcastle centre still refused to take him, despite being told if a donor heart did become available later, he might not be fit to travel by then. All his devastated parents and family could do was watch helplessly as their precious little boy slipped away.

Gary said: “No one was listening and we just felt so helpless and desperate.

“To us it seemed like Leo was distant noise to Newcastle Freeman and they just didn’t want to deal with us. I think it’s just down to where you live. In the time Leo was on the ‘urgent’ list I have found four other children who were given heart transplants - three of them live in the Newcastle area and one has a parent from the area.

“It’s a postcode lottery. If you can’t get a bed in there then your chances of getting a transplant are minimal and if you live nearby then you’re obviously in a better position of getting a bed in the first place.”

On the day Leo died he suffered series of cardiac arrests and Gary says despite this, Leo was ignored by the cardiologist on duty that day.

He said: “The consultant cardiologist who was in the next ward at the time was informed Leo was having cardiac arrests, but she deemed it not worth her time that the sickest heart patient in the country was in so much trouble and just walked out the building without coming into the intensive care to see him.

“We also discovered that one of Leo’s key drugs that kept him alive and fighting for so long had been turned down by 60 per cent from its normal level. This was flagged up by us, not the hospital staff. Right up to the day we lost him, we were having to police his care ourselves.”

Sharlene, a freelance hairdresser, added: “We are not bitter that other children have been given transplants. What is hard to accept is that Leo waited three months to be listed as urgent and there has been cases of children being listed and a heart found within a week. If Leo had been offered a transplant we would have taken it, no questions asked.

“What’s happened has happened and we are devastated but our outcome can’t be undone.

“We will never get Leo back, but we just would like changes to be made and the deciding factors on who gets a transplant to be based on fairness and need - not on geographical location.”

A spokesman for NHS Greater Glasgow and Clyde said: “Our thoughts and sympathies are with the Williamson family at this difficult time. We will invite Leo’s family to meet with us to discuss any concerns they have regarding the care he received.”

A spokeswoman for Newcastle Freeman Hospital, said: “Unfortunately there are many children listed for transplant who will not receive a transplant in time due to the donor shortage and this is a national and international problem. Ideally all children who are severely unwell due to heart failure and cannot have conventional surgery would be offered the opportunity of heart transplantation but unfortunately at the present time some children and adults die waiting for a suitable organ.

“We are not able to comment in detail on any individual cases but wish to support all efforts to improve the donor pool.”