Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Max L

Max Sebastian Lechner

Call it Mother's intuition or not, but throughout my pregnancy with my third child, Max, I always felt something was not quite right. At my 20 week scan the radiographer couldn't get a proper picture of the 4 chambers of the heart and I had to return several days later in the hope that the baby had turned and a clearer picture was possible it wasn't. We were living in London at the time and it was busy inner city medical practice and possibly because of time pressures the radiographer ticked the box saying the 4 chambers of the heart had been seen.
Max LMax Sebastian Lechner was born by elective caesarean section on Monday 6th December 2000 at St Mary's Hospital, Paddington a millennium baby! Straight away I knew something was wrong but couldn't quite put my finger on it. During ward rounds the following day a junior doctor detected a heart murmur and Max was transferred to the PICU and from there to the world renowned Royal Brompton Hospital where we were told that Max gad a heart condition called Truncus Arteriosus (a rare type of heart disease that occurs at birth in which a single blood vessel comes out of the right and left ventricles, instead of two vessels, pulmonary artery and aorta) and that he would require an operation. Naturally we were shocked and the home coming to our two other boys Danny (5 at the time) and Christian (who had just turned 3) was definitely muted, as obviously we were concerned about Max's prognosis.
Max failed to really thrive during the following weeks at home and unfortunately contracted RSV (Respiratory Syncytial Virus) and we took him immediately to St Mary's Paediatric A&E as Max's consultant, the wonderful Dr Ghaus, had given us a Priority Pass for A&E for such eventualities. Yet again Max was transferred to the Royal Brompton and was barrier nursed and put on CPAP (Continuous Positive Air Pressure) which helped keep his bronchioles or air sacs open since the virus shuts them down and oxygenated blood was not circulating around his body. It was now a case of being patient and waiting for the virus to stop attacking his body so that his heart operation could take place. Unfortunately Max's first Christmas was spent in hospital and in fact, we decided to have him baptised at that time as a precaution as the virus was causing him to go into 'heart failure'. Eventually our prayers were answered and he was tested again on Thursday 28th December and all the results came back showing he was RSV negative and his operation could finally take place the next day. The operation involved establishing a continuity between the right ventricle and pulmonary artery using an aortic antibiotic sterilised homograft 9a human conduit) and took approximately 3-4 hours and it was an immense relief when bleeper went off and read 'all went well'.
After a number of days in PICU where Max was slowly weaned off the drugs, I was finally able to hold him on Friday 5th January what a feeling! He was transferred soon afterwards to the main ward and was finally discharged on Thursday 11th January 2001. Life could finally begin!
Max LMax became an integral and very much loved member of the family and even from and early age was always happy, had a smile on his face and charmed everyone he met.

In February 2004 he started nursery and flourished and by the time he 'graduated' in August 2004 his key worker wrote in his final report... 'Max is now a very popular member of Treetops Nursery. He comes to the nursery with a broad smile on his face and greets adults and peers with a lot of warmth and continuously talks about his brothers.
Max LThat Summer we moved back up to Aberdeen, where I am originally from, and the boys quickly settled down to a much more laid back life than they had been used to in London. Max attended Rising Fives and then went into the nearby local primary school's nursery where it was thought best to hold him back one year due to his global developmental delay. Although Max about 6 months older than his peers he kept up fairly well with them and only needed additional support at the base unit from his school for math & reading, otherwise he was with his classmates doing the same work as them the rest of the time. During his early primary years, he often had a classroom assistant to help keep him focused on his work, as there were far too many interesting things going on around him that he wanted to get involved in! Max became a popular member not just of his class but also of his school where his older brothers now attended. Max, although not a 'Ronaldo', was a keen member of the football team and he just took sheer pleasure in playing the 'beautiful game' and enjoying the camaraderie with his friends and teammates not caring whether his were 10-0 down or not!
In 2009 the aortic graft that had been put in back in London in 2000 was calcifying and Max was noticeably becoming more tired and often couldn't play his beloved football or run for very long periods without becoming out of breath. All along we had been told that Max would need at least 2 further operations in his lifetime because, although the graft didn't get rejected by the body, it doesn't grow with it, so bigger sizes needed to be put in. His consultant in Aberdeen therefore referred Max to the Yorkhill Hospital in Glasgow on Thursday 19th March, Max underwent his second open heart surgery under the expert care of Mr Kenneth McArthur and, again, after an agonising morning we were informed by early afternoon that 'All had gone well'. to our amazement the graft that had been put in this time ended up being a bovine neck vein Oh, the wonders of modern science!
Max LMax surprised us all by sitting up in bed in ICU the following day, and even more surprisingly, we all returned to Aberdeen 5 days later! Max recuperated well at home that Spring and couldn't wait to get back to school after the Easter holidays to show everyone his scar!

Life for us went back to normal with Max grabbing life, as usual, with both hands whether it was playing with friends, going to birthday parties, enjoying annual holidays in Portugal, cycling his bike or moving up from the Cubs to Scouts, he just took pleasure in everything he did life was there to be lived and, boy, how he lived it!
Our lives changed irreparably on Friday 9th December 2011 when shortly after coming home from a scout meeting, Max came to me and was shivering and saying he wasn't feeling well and wanted to go to bed. Naturally, I just assumed he had 'flu or a 24 hour bug, but by the following Monday, Max started to complain about sore legs and soon he found it agonising just walking from one room to another. By Thursday 15th December his condition seemed to worsen (by this time he was complaining of a sore neck, his temperature was till very high and I noticed small spots on his body), I rang for an ambulance and he was taken to the Royal Aberdeen Children's Hospital and immediately put on antibiotics. A second scan the following week, unfortunately revealed that there was vegetation around Max's heart graft and valves caused by the staphylococcus aureus bug which Max had obviously picked up somewhere.
Max was transferred that night (Monday 19th December) to the Yorkhill Hospital in Glasgow and was again operated on by Mr McArthur on Thursday 22nd to replace the infected graft and to suction out all the pus that the bug had created. All seemed well and Max again recovered quickly and was transferred tot eh High Dependency Unit of Ward 5a on Christmas Eve. Yet again, Max spent another Christmas Day in hospital but, this time, was loving all the attention and especially enjoyed Santa's visits and the presents he left for him. Max was even moved into an upright chair and his nurse that day took what turned out to be the last family picture of the 5 of us, so we could text it to all our friends and family how important that picture is to me now!
Max even felt up to having something to eat later in the day and even played a little xbox with his older brother, However, later in the evening, he did complain about a sore neck and sore head but I just put it down to him having sat up in a proper chair for the first time since his operation and because the ward was quite warm.
I kissed him goodnight, as usual, and as always, told him I loved him but unfortunately that was be the last time we ever spoke to each other because I was awoken early the next day to say that Max had been moved to the ICU following two focal seizures caused by the infection which had in turn, caused a myctotic aneurism - a localised dilation in the wall of a blood vessel caused by the growth of a fungus which usually occurs as a complication of bacterial endocarditis. By the time my husband, Ludwig, and I arrived by his bedside there were loads of nurses and doctors stabilising him and we unfortunately witnessed a further two more short seizures. On Boxing Day afternoon, Max was transferred to the Southern General Hospital accorss Glasgow where he underwent emergency surgery to stop the bleed in his brain by coiling and aneurism through his carotid artery, a procedure made more complicated because his was discovered to be very small and narrow, again a congenital abnormality of DiGeorge Syndrome which we didn't even know about. However, after the successful coiling procedure, a further team of neurosurgeons removed the blood clot and inserted a ventricular drain. The following day we were all round his bedside int eh acute stroke ICU ward and gradually his sedation was stopped, however by late afternoon there had been no improvement and a repeat CT scan was performed which showed that the blood clot had recollected and the pressure on his brain had increased and it was then that we were told what NO parent EVER wants to hear, that further surgery would be futile and there was nothing more they could do but make him as comfortable as possible. The life that I had know up until that very moment, stopped, and I will never be that same again.
We then spent the next 48 hours saying our goodbyes, lying beside him, talking into his ear and letting him know how much we loved him and that he was not alone. Finally, in the early hours of Thursday 29th December 2011 Max took his final breath with me lying beside him holding his hand snuggled into his neck.
Max's funeral took place back up in Aberdeen on 5th January 2012 and it was a testament to the mark that he had made on so many, young & old, during his short 11 years that there were over 400 mourners at his funeral. He was laid to rest in a lovely cemetery up on a hill not far from our house which I can see everyday from my bedroom window!
Max LI hope that all those who knew him will never forget his bubbly, happy character and will stop once in a while in their busy lives and just take a moment to remember the way in which he lived his life, making the most of every single day with such a happy go lucky attitude.

Max Sebastian Lechner we will never forget you. Until we meet again.

Mumma

Clare Lechner 2012