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Apr 21, 2017 Latest post:
Jul 29, 2018
John was born in University Hospital of Wales in Cardiff on 5th April 2010. During 20 weeks scan doctors discovered that there was some problem with John's heart and we were sent to Cardiff for proper checkup. Dr Uzun, one of the peadiatric cardiologists discovered that John have Tetralogy of Fallot, which is a rare congenital heart defect (its actually a group of 4 defects: VSD, pulmanory stenosis, right ventricular hypertrophy and overriding aorta). We were told that this kind of heart condition is associated with Di George Syndrome but we would have to wait for the test to be done after John was born. We spend next few months driving to Cardiff every 4 weeks for regular checkups just in case John had to be delivered early. Every visit was heartbreaking, we were even asked if we would like to abort the pregnancy. Finally the day arrived and John was born naturally on 5th of April 2010. Unfortunately the same he was transferred to PICU and put into incubator as he was born with some infection and needed antibiotics. We spent another week in the hospital waiting for John to get better so we can take him home. Unfortunately our happiess at home didn't last long. Only at age of 11 days John was rushed to Carmarthen Hospital with swollen belly. Scans couldnt show what was wrong and we were sent on blue light to Cardiff where doctors were still not sure what was wrong and decided John needed emergency surgery. It took nearly 6 hours and only then we found out that John had a strangulated hernia which perforated his bowel and started toxicating him - few more hours and John would die. While John was recovering after his operation we had results from Di George Syndrome. and they were unfortunately positive. John was diagnosed with Di George Syndrome. That started a massive line of appointments with all the specialists and more and more bad news. John's immunity level were only 10% of what it should be and he was put straight away on daily antibiotics, we found out he had calcium defficiency and sacral dimple which could lead to some more neurological problems. Our biggest worry was his heart as we were told he could get blue spells and needing a surgery at any time. Finally when he was only 5 month old day of the heart surgery came. We had to drive to Bristol on 7th September 2010, spend a night there and then next day John had a 5 hours open heart surgery to try to fix his Tetralogy of Fallot. Operation was succesfull although fix is not permanent and John will require another surgery in the future. After his heart surgery we were really hoping things will get better and he started to finally sit and crawl (before his heart surgery John would just lay down and do nothing apart from smiling). He had another 2 hernia surgeries but there weren't any problems. One of the most scarry moments we had was when John cought a rota virus and ended up in hospital with severe vomitting, after only few days doctors let us go back home but then within just a day John got so dyhadrated that we had to rush him back to hospital and we were told to say goodbye to him as doctors thought they won't be able to save him. Our little boy didn't give up and after another over a week in hospital he was back home. John is now 7and doing quite well. His heart worsened over last 2 years, right side of his heart is enlarged and struggling a bit but blood presure is still satisfying and plans of another heart surgery didn't change - he will need another one when he is a teenager. John's immunity is still low and he still needs his daily antibiotics, his calcium defficiency is still a problem as its impacting on his teeth ( as well as acid refulx he's got). Big part of Di George Syndrome is difficulties with learning and speech. John didn't start talking till he was five It took very long time for him to start making any sentences. We do have speech and language team involved, they helped us a lot and put John on the right track. In last few months he started to read very simple words and we are delighted by the progress he is making right now. Unfortunately one of Di George Syndrome aspects is behavioral problems and this seems to be the biggest struggle for us at the moment. Although we had help from specialists and we know how to react to his needs (he still has problems with expressing his needs and thoughts) there seems to be a big struggle with John at school where he would attack his friends and even the teachers when he gets distressed. He is scared of loud noises and light. Doctors are suspecting that John might be on autistic spectrum and most probably he has got ADHD. His sleep patterns are a big issue - he is on melatonin and circadin to help him sleep but even with those medications and he wakes up 5-6 times a night and not willing to go back to bed, putting a lot of pressure on whole household. Dispite big range of difficulties, mental and physical, John is a happy boy who loves his family and his cars (his only obsession) and enjoys his life. We love him to bits and keep fighting for better life for him.