Ayrun Newbrooks

Ayrun our beloved son, younger brother to Adam and grandson.
Died aged 22 months on the 15th of December 2005.

Ayrun was born ten days overdue on Friday 13th of all days! unlucky for some,special to us.
Weighing 9lb Ayrun had to fight from birth,however I do smile remembering him in the special care unit alongside the premature babies he looked so huge!.Ayrun spent his first few days in there with support for his breathing as he was not breathing at birth and needing an antibiotic drip for a very swollen tummy. On returning to the ward to be with us I noticed how grey he looked especially around his mouth and nose but I kept being told it was perfectly normal but I knew otherwise.After much nagging the Doctor came to see Ayrun and found he had an heart murmur and was told not to worry! having had my older son Adam 2 years earlier and hearing the same words I had every reason to worry as Adam required open heart surgery at 11months.Nothing however prepared us for the fight Ayrun was to have.
At five days old myself and Ayruns dad went with him to another hospital for a heart scan and Ayrun was found to have Tetralogy of Fallots ( four defects to the heart) and would need heart surgery at about a year old when he had grown and become stronger unless Ayrun became ill then it would be sooner,so we then took Ayrun home but would need to return for regular appointments.Over the next few months I seemed to be making alot of trips to my health visitor,doctor and hospital as Ayrun repeatedly became ill with a cough that sounded like "whooping cough" which it wasnt but he had difficulty breathing after a few of these episodes and going back and forth the hospital I became concerned that Ayrun may also have something else serious going on as Ayrun was failing to thrive physically,it was arranged for him to have his heart surgery sooner in October of 2005 but Ayrun became very poorly in a different hospital, yet again with his chest and the operation was postponed until he gained his strength back ,December 13th aged almost ten months.Myself and Ayruns dad took Ayrun and his brother Adam the day before to "heartlinks" christmas party we was due at the hospital for pre ops at 2pm but the party was until 6pm so we begged the nurses to let us party first and they agreed so we later turned up adam with his face painted and them both with early presents from santa. The hospital was great about it all and a bedroom is even provided for parents and siblings,the next morning Ayrun was taken to theatre and would be there for at least 5 hours so me and his dad went shopping to spoil him and my dear friend Tracey came too.Later on that day we were alowed to see Ayrun in cicu where he was sedated and on a ventilator to recover,then complications began.Christmas was nearing and we was told that Ayrun would most certainly be spending his first one in hospital and possibly still on a ventilator so as a family we decide that our tree and trimmings would stay up and we would do christmas when we were all home.On christmas eve we collected some presents from home and took them back to the hospital then sat with Adam and wrote a letter to santa asking to bring a few gifts there,and he did!.On christmas morning after seeing Adam open his presents I left him on the ward with his daddy and grandma and I went down the corridor to cicu to see Ayrun and take him a reindeer suit,yet the nurses had a surprise in store for us! they wanted to wake Ayrun and remove the breathing tube so I was asked to leave whilst they did that and return after lunch to see Ayrun awake,what a gift.sometime later I recieved dissapointing news that they had woke Ayrun but he was unable to cope breathing himself so they had to sedate him again,what a blow but if aslong as Ayrun was comfortable and he certainly seemed to be becoming just that! We all remained at the hospital and on new years eve( my birthday) the intensive care nurses told us they was going to try and wake Ayrun again and they did and although he looked very poorly Ayrun was able to return to the ward,best birthday present ever.After being sedated for almost a month he had very severe withdrawels from all the drugs he had been on and Ayrun was unable to feed and unaware of his surroundings and concern was growing from family and close friends and the doctors that he may have permanent brain damage.A week later I begged the doctors to allow me to take him home as we felt that he may be better there as I was sure my boy was very frightened and they agreed I could take him and when my friend Tracey turned up that night to visit she was surprised to be taking us all home late on a friday night.Ayrun was no longer able to sit and was difficult to make him comfy other than in his pushchair or someone continually sitting with him on the settee as he was far to big for his bouncer chair.On the sunday only two days after returning home his daddy was sitting with him and Ayrun smiled,how we celebrated,he was going to be just fine. Life continued and our boy still was back and forth all the health proffessions my health visitor never tired of my phone calls or asking her to visit and it seemed quite often! she was a rock in believing in me as I still felt something else was wrong.In early february a month after coming home again and having just got over chicken pox ayrun became unwell he stopped feeding was very lethargic and was continually sleeping,so after advice I took ayrun to childrens AE I was so used to doctors thinking I was some crazy mum but I wasnt prepared for the doctors remarks on this occasion he came in a side room to see myself and ayrun he didnt even touch my child he just said there is nothing wrong and not to return with him unless he was having a convulsion or bleeding heavily,i was fuming i then rang my health visitor and she then took us back on the advice of another hospital and he needed to be kept in,so much for that so called doctor.This wasnt the only time we had been sent away previously it had happened so i turned up at the hospital who looked after and treated his heart and he was very ill needing to go to intensive care,it was one big battle against one hospital.In the July Ayrun was again in hospital with his chest and whilst I came home to see my older son Adam the doctors spoke with Ayruns dad and on my return to hospital he told me Ayrun was discharged something flipped inside me and I refused to take Ayrun home or move until we were listened to and they found out what was causing Ayrun so much ill health,strangely enough a consultant soon arrived and agreed Ayrun would have a bronchostopy ( camera to look at airways etc) I felt relieved and we came home to await the appointment.Two weeks later we returned to the hospital for this and Ayrun was taken down,I was waiting and waiting whilst other patients returned to the ward had dinner and went home yet there was still no word on my Ayrun so I more or less grabbed a nurse! and told her somethings wrong and asked her to ring theatre she did and I was taken to Ayrun in recovery I was told he they had found him to have a narrowing of his windpipe,paralysed left vocal cord and a floppy larynx and may in future need a tracheostomy,my instincts were right there was something wrong,so due to having a camera placed down there was complications and was having difficulty breathing he was taken to intensive care and placed on a ventilator where myself and his daddy was told to prepare ourselves for him not to pull through,he kept fighting until 6 days later he had a cardiac arrest,the wonderful staff saved him and was to be transfered to his "heart" hospital for a CT scan this found an aneyrysm and needed emergency surgery to replace his heart valve this was done a few hours later and went well,but again Ayrun was enjoying his rest! and took several weeks to be able to come out of intensive care and when he did he suffered severe drug withdrawels once again which meant his physical development had to once again begin with learning to sit up again at 18months.Ayrun came home again yet nothing really felt to be sorted for Ayrun he was very small for his age(very chunky mind) could not put weight on his legs and still had a bad chest,how I felt I was banging my head against a brick wall.In October I told his daddy we need to do christmas shopping early as we most probably be back in hospital before and I wanted a good christmas for Adam and Ayrun.On the 7th of December I again took Ayrun doctors with his chest and being very sick and he could not do anything other than send us hospital as Ayrun couldnt have inhalers as it would make his condition worse.I took Adam out of school and we all took Ayrun hospital.Me,adam and daddy arrived with you at the hospital at 12pm on the 7th of december 2005,Ayrun was first assessed by a student nurse,I did however go to the nursing station and tell them I was unhappy that the student was not accompanied by a staff nurse,with them all knowing Ayrun well and of his serious health problems,we were then left to wait..and wait and I then returned to the nursing station to find out how they was going to help my boy.A doctor sometime later then came to see Ayrun and said he would try Ayrun with a nebuliser I then informed them if they read Ayrun's notes they would see that he wasnt alowed these as it would cause his condition to worsen with this the doctor then went to phone Ayrun's consultant and then a nurse returned stating Ayrun could have the nebuliser as he was in a 'safe' place I trusted the consultant as I had seen him many a times and was actually the only one whoever listened to me and believed in me.Ayrun had the nebuliser and went sleep in my arms after much distress( Ayrun was not allowed to be left cry for long as it would cause breathing problems) by now it was 7pm and we decided it was best Adam went home with his daddy so I sent them on their way with money for the chippy! I was still holding Ayrun and was becoming more concerned about his breathing and his fast heart rate and no one seemed to becoming to us so I shouted! rather loudly for someone to take a bit of notice of my boy at this they then became concerned and Ayrun was given oxygen and moved to a bed nearer the nursing station by now we had been on the addmissions ward for 10 hours.a different doctor then told me Ayrun would need to go to the ward overnight then checked Ayrun over and said they would call an intensive care doctor down to see us,at 11.30pm Ayrun was taken to intensive care,I stayed with Ayrun all night different treatments were just making my boy worse and he was really working hard with his breathing and heart,at about 5pm on the 8th my friend tracey was due to come and see us so I went downstairs to meet her,on my return I was not allowed back in(quite normal if doctors are seeing children or doing procedures) so I sat outside waiting thinking nothing of it.Sometime later I was allowed in to find they had put Ayrun on a ventilator I became quite upset they hadnt told me and I felt they were sly in not informing me given I had my phone and was in the hospital I made my feelings known as Ayrun should have been allowed a kiss of mummy first,Ayrun had a few complications but I was told doing well and would be home for christmas,however on the 15th I kept asking if all was ok as alot of people seemed to be tending to Ayrun and I knew something wasnt right given Ayrun had a very very swollen tummy,suddenly in the evening im told he needs an emergency operation on his bowel ( he went in with bronchulitus) Ayrun went to theatre at 8pm Tracey my friend arrived as daddy was home with Adam,we sat waiting and we were told to ring Ayrun's daddy as his heart had stopperd twice in theatre,I went to meet him and Adam Tracey then stayed with Adam in the relatives room and pete and me had a walk when I recieved a phone call from the nurse caring for Ayrun I already knew what was to be said,Ayrun had died,when they opened Ayrun the bug from his bowel released into his blood stream and he diedAyrun became worse and the next day was back in intensive care on a ventilator he continued to have complications and on the 15th of December he needed an emergeny operation to explore his organs once in theatre Ayruns heart stopped twice and was restarted it was found his spleen,liver and kidneys and part of his bowel had died and on operating on his bowel his heart stopped again,Ayrun died 9.49 pm 15th December aged 22 months and 2 days.

Sleep With Peace.

Why didnt anyone listen to us Ayrun?



Im certain I know what happened to my son yet they wrote pneumonia on his death certificate,only that morning I was told Ayrun had recoverd from bronchulitis and his chest was clear,so why can no one be honest?

Ayrun my special little boy even through all your suffering son you always had your smile return you made many people happy,at your playgroup you would bum shuffle around in just a nappy as you wouldnt put your clothes back on after having your usual massage there by Sue that you just loved,even when having your massage you had other people delivering toast to you!.When it was time for playgroup to finish the workers would gather all the children in a circle to play the drum and sing some songs,you loved the "roly poly" song and although you wasnt able to physically do much you knew all the actions to the song and with the right timing and whey and behold anyone who forgot to have that song, parents would instruct it to be sung as Ayrun was the star of that song and all eyes were on him. When at home you and Adam wouls sit for dinner toggether you would never eat yours yet you always took Adams when he wasnt looking! Adam has a great memory of you and he always reminds me! from the day you was born you always suffered with passing your bowels and would distress you so much,one evening you and Adam was bathing togetther and suddenly what was floating in the top?! Adam finds it so funny as I had to quickly get you both out and then re bath you both that is after fishing the floaters out!! The doctors told us that you needed an operation on your ears (but you couldnt have as the dangers of operating where too high with your health) as you had very limited hearing and I seen the many results from these that showed this to be true but son you heard what you wanted didnt you?! you was unable to say many words the first word you said was "Adam" and on your last admission to hospital you shouted out for Adam,it was your first and last word you said.Do you remember how you would only let me your daddy,grandma and Tracey pick you up? yet when you was shuffling around the garden playing with Adam you would put your arms up to Dave(daddys friend) and let him pick you up but when he got back to me you wanted to be put back down,you just wanted a quick lift indoors! you are a very wise boy son. I treasure the memory of when daddy hired a car to take me you,Adam and grandma to Blackpool in the summer of 2004 you spent the whole day asleep! I think the sea air was good for you and gave you a well deserved rest,we will never go back there now son it was your first and only trip to the seaside with you and could never go back to the same place without you,family have been to a different seaside and put flowers in the sea for you.Shall we talk about Tracey and you now? how you had her wrapped around your very tiny finger! didnt you? Tracey I first met when taking Adam to our local playgroup she was the family and community nursery officer and when you was born she would spend time with you and Adam and as you got older and it was clear you had very slow development our health visitor refered you to her and weekly visits from Tracey began to encourage your development and me and Tracey became friends which at times proved difficult for me and Tracey as she wasnt supposed to be come personally involved as she did hey Ayrun?.Very often you wouldnt eat then Tracey would bring something she had made for you at home or get me in the kitchen with her,I let her get on with it! you would then eat for her!! and at times when i was stressed or I couldnt seem to console you she would take you home for a couple of hours(thats the meaning of takin work home!) She would come over at a weekends and take me, you and Adam out for a drive to the park or to Foxton locks,Tracey grew very fond of you as you did her and you would make each other laugh,then Traceys visits became daily she would come everyday after work just to have her dose of Ayrun before going home.Tracey means so much to us all doesnt she Ayrun?.

Ayrun my precious little man,we think and talk of you everyday ,Adam looks for you,the brightest star in the sky and blows big kisses,I have you in my heart and thoughts everyday son until the day comes that we are reunited.I Love You with ALL MY HEARTxxxxxx