Leon’s Story

Leon Montanari was born on 11th October 1996 in Singleton Hospital, Swansea, South Wales and weighed in at a healthy 8lb 12oz.His first night was stable but he felt cold and I noticed his lips had a blue tinge.

The next morning the paediatrician came to do a routine check and spent quite a bit of time listening to Leons heart and when he looked at me and asked where Leons father was, I knew there was something wrong.

The paediatrician told us he could hear a ‘whooshing’ noise instead of a beat and that Leon would need to be taken to intensive care so that more tests and investigations could be carried out.

A little later the nursery staff came and took us to Leon where we found him in an incubator and we were sat down and informed that he would need to be taken to Cardiff straight away as it is a specialist cardiac hospital. I was to follow up separately in an ambulance.

Upon arrival in Cardiff I didn’t know what was going to be ahead of us. We were taken to a room along with Leons grandparents and there we were given the most devastating news. Dr. Stuart told us that Leon had been born with a rare heart defect called ‘Hyper Plastic Left Heart Syndrome’ and that at the time there was only one operation that had just become available. It was called ‘Norwood Stage 1’ and it gave Leon only 50/50 chance of survival.

We agreed to the operation straight away as we believed Leon had the strength to fight but the surgeon was in Romania at the time and he would have to be called back to examine Leon and decide whether or not the operation could go ahead.

We had an anxious 2 day wait but it was good news – the surgeon agreed to do the operation. Leon remained on a ventilator fighting for his life until the operation took place 3 days later.

On the day of the operation we experienced the longest 8-hours we have ever had but eventually we were called and told that Leon had come through the operation and we could go and see him.

Day-by-day Leon started improving and getting stronger and eventually he was able to come off the ventilator and that meant we could cuddle him for the first time. He spent the next four weeks in intensive care getting stronger and stronger and was then transferred to the Heulwen Ward where we spent the next two weeks caring for him and learning about his new medicines until finally, he was allowed home!

The first four months saw Leon doing very well despite lots of hospital appointments, until one day in the out-patient clinic we had more devastating news. Leons heart was failing and the doctors were going to write to both Birmingham and Great Ormond Street hospitals for advice and second opinions.

Within a week we had a call from Dr. Stuart to say that ‘Norwood Stage 2’ could not be performed because they felt that Leon would not survive the procedure and the only treatment now to keep Leon alive was a heart transplant. We were devastated.

An appointment was made for a transplant review at Great Ormond Street which involved a lot of tests and talks with doctors, liaison nurses and pharmacists. After a very long wait we finally got the news we were waiting for – that Leon was being put on an active transplant list. Leon was now 6 months old.

Months went by and we heard nothing. I would ring the hospital on a regular basis hoping that I could get answers that were impossible to get. It was the longest four months ever!

It was a Saturday morning and Leon wasn’t well so after lunch I thought I would take him out for some fresh air. Whilst we were out his ‘Life Pager’ went off continuously so I tried desperately to find a ‘phone – I didn’t have a mobile at the time. I eventually contacted Great Ormond Street and was greeted by a lady who informed me that a possible organ donor for Leon had been found and that I was to make my way home immediately and an ambulance would transport us to a helicopter.

At 9.20pm we kissed Leon and laid him on the operating table. At 3am on 31st August the surgeons came to the relatives’ room and told us that Leon had made it and we could now go and see him. We saw our beautiful little boy, pink in colour and sleeping peacefully. This was one of the happiest days of our lives, but we didn’t forget that someone had lost a child in order for Leon to have the gift of life!

For 11 days Leon remained on Life Support due to a lot of problems following the transplant which was a lot longer than expected – the usual is around 2 – 3 days!

As he was being taken off life support his behaviour gave cause for concern and it was suspected he may have suffered brain damage and I had an anxious wait for the results of another round of tests and it seemed to take forever but eventually the doctors were able to rule out brain damage and confirm that the problems were due to the amount of drugs and strong medication he was on. From then on Leon went from strength to strength and on his first birthday he was discharged – what a fantastic birthday present!

He continued to thrive and weeks turned to fortnights to months, the hospital visits became less frequent and the doctors were very pleased with his progress.

At two years old Leon started play school living life to the full as a healthy, active little boy getting up to all sorts of mischief as kids do!

He carried on through school and at around five years old it started to become apparent that due to lack of oxygen from birth and all the strong medication, he had some learning and behavioural difficulties and these impacted on his primary school years. This was made worse by him becoming epileptic due to “heart block” which no-one was aware of at the time and these problems became worse during the last year as the heart block became more frequent which meant more time in hospital and more worry as it was clear something was not right.

However, he managed to complete his junior school years and was ready to move on to comprehensive school which he was looking forward to, but his health continued to deteriorate during the school holidays which meant he was not able to start when he should have.

It was at this time I became so concerned that I asked for the team at Great Ormond Street to review Leon and an angiogram (cardiac catheterisation) was carried out and the result was the devastating news that his heart was getting stiff and tired and that there was nothing that could be done to help him. I was advised to take him home and enjoy the time we had left.

Eventually Leon was admitted to the University Hospital of Wales in Cardiff and it was here I was told that he was suffering rejection of his transplanted heart but was reassured that the team there would do as much as they could to help him. The treatment started with a course of diuretics and a chemotherapy drug called Retuximab which kills off some of the anti-bodies that cause rejection.

After the course of treatment was finished, Leon seemed to improve and was given the chance to fulfil his dream of starting comprehensive school where he could be with his friends again.

He enjoyed every minute of his time there, the routine of getting up, getting ready (his hair had to be just right!) and enjoying the company in the staff room where he could be found helping himself to a cuppa!

Three months later however he unfortunately began to deteriorate again and one day at home suffered a cardiac arrest. He was rushed to the UHW where he was hit by three more and had to be resuscitated each time. At 4am Dr. Uzon and his team performed a life saving operation that involved inserting a small wire through an artery in Leons neck, into his heart. The wire was attached to a battery and once he was on a ventilator, He was transferred to Bristol Childrens Hospital where a pacemaker was fitted the following day.

Things settled down for a while but it was not possible for Leon to return to school so I organised some home tutoring for him. Everyone worked to build his confidence again and soon he was able to play with his friends and start living life again. He also started to get quite stroppy and defied me and the doctors by play-wrestling and jumping up and down on a trampoline!! Whenever I caught him, he would just laugh at me having a fit, ignore my calls to him to stop and carry on!!

He was eventually able to go back to school two days a week and he couldn’t wait to catch up with his friends and favourite teachers but it wasn’t to last as only a couple of months later the rejection started again and Leon became very ill. When I recognised the signs it was straight back to Cardiff and another course of the chemotherapy, immunoglobin and diuretics.

This lasted a month this time and at the end Leon was getting fed-up and tired with it all and some days he was very emotional. I would lie on the bed with him and he would ask me about dying to which I would have to lie to him and tell him not to be so daft and that he would feel better soon. There were times when I used to get down and wonder why he was not being offered a new heart and when we went to GOS for checkups Leon would ask when he could have a new heart, but the answer was always “not yet, we are going to try some different treatments”.

Within three months, Leon had deteriorated further and we went to GOS for a meeting with the transplant team regarding a second transplant. A battery of tests and two weeks later it was decided it was time and Leon was placed on the transplant list again.

Time went on and Leon was spending more time in hospital than at home and he used to tell me that if anything happened whilst he was at home, I wouldn’t be able to help him and so he felt safer in hospital. He felt very much at home on the Heulwen ward where he could have a laugh with the doctors and nurses who had become more like friends to him.

I was grateful as I knew he was being looked after. I also knew in my heart that time was not on our side. Every day we waited for that call to come – but nothing.

On Monday 26th October 2009 Leon and I were in the playroom waiting for a visit from his grandparents (my parents). It was getting later and later and we couldn’t understand why they were so late and then a nurse came and took me to one side. She told me that my father had died that morning. He had been found in his car and it turned out he had been doing his daily jobs before going home to pick up my mother for their trip to see us.

I was devastated but I then had to tell Leon that his beloved ‘Bampa’ had passed away and I was going to have to leave him for a while as I needed to get back to Swansea to my family. Leons dad, aunties and friends helped out over the next few days and Leon would tell me on the ‘phone that he was fine and for me to stay with Nanna.

On the Thursday evening I returned to the hospital and Leon and I sat in the playroom eating his favourite KFC – he had happily ordered a meal for four so there was plenty of food to go around!! Afterwards, I laid with him on his bed and sent messages to family and friends and he then settled down for the night, hoping he was coming home in the morning.

The following morning when I went in to him he was still sleeping so I waited for the doctors to come for their rounds. When they saw him they said he wouldn’t be able to go home that day as some of his blood tests showed problems and they needed to keep an eye on him.

Leon woke briefly and saw me and the doctor talking and went back to sleep. I let him rest for a while and I went off to make myself a drink but a nurse came to get me as he had been sick so I ran through to him to find him unconscious. I called for the doctors who came very quickly and began trying to bring him round. They all worked so hard to resuscitate him but Leon was not responding and there was nothing more the team could do.

He looked like he was sleeping peacefully and I held him in my arms as he slipped away.