In The Beginning

 

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Parents of Special Babies

In the beginning

26 Years Later

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28 years - the Truth

What happened next?

Brendan's condition

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May 22, 2004 and this website has now been published for one month. The story that will unfold if you read it all relates solely to myself and my family. I am and have been fully aware from the very beginning that we are just one family amongst thousands of other's that have gone through a similar experience and ordeal and not only that, there are still many thousand of other families that are NOW unaware and they may or may not find out in the future that body parts of their loved ones are stored at some hospital.

THEY WILL NOT TELL YOU, YOU HAVE TO ASK FIRST!!

 I have read and heard stories of organ retention that are far worse and greater than which I have experienced and as stated by Kay Wadey in her email to me (see Replies and Response's' webpage), in empathy and sympathy my heart goes out too ALL families concerned.

Shaun McGuire

___________________

 

 

Brendan Sean McGuire

 

Click on all images to enlarge and read

 

Brendan's grave

 

Brendan Sean McGuire was born on May 29, 1974 at the Lydia Beynon Nursing home at Newport, Gwent UK now the site of the Celtic Manor Resort and golf course. He died the following day at the Royal Gwent Hospital after he was transferred there for an operation to correct an intestinal problem that he was born with. This is the story of Brendan's short life and of his parent's, Shaun and June McGuire's life at the time of his birth and subsequently his family's four year fight to discover the full facts of the events following his death.

On this website you will find every piece of information that I have about my son Brendan from the time of his birth until 28 years later when we are finally told the the truth? about the body parts that were removed from him. The information on the website contains every letter that has been sent from myself and received by myself. Every newspaper cutting that has relevance to my fight to find out the truth, when for 2 years I was told nothing but malicious lies by the local health authority for an action that was eventually found to be illegal. These lies then themselves became illegal as they 'aided and abetted' that act.

Read these lies and then read the other lies that come about when the truth is told, read how the 'buck gets passed back' from the point 'where the buck stops'. The letters attached to this website will prove every point I have made. Read how 'cover ups' start not only from where 'the buck stops' but also from so called 'completely independent' sources.

Apologies for the above rhetoric and if had read that on some other website, I would not have not gone any further, so please be a little patient with me.

 

 

Brendan

On Wednesday May 29, 1974 at about 6am, June McGuire felt that the baby she was carrying was soon to arrive. We both quickly got ready and as we had no telephone, we had to knock up the next door neighbour and asked to use their telephone so that we could contact the hospital to say that her waters had broken and that I was bringing her in.

It was a beautiful summers morning with the sun shining brightly and as we left our home, our neighbour whose telephone we had used, came out and wished us luck and said "What a beautiful day to have a baby on", then the Nightmare began and resurrected itself 26 years later and was still continuing over 30 years later.

We arrived at the Lydia Beynon Nursing home at 7.15am after dropping our daughter Nicola at her grandparents home. We were taken up to first floor and I was then sent away. June was put on a trolley in an office and the nursing staff then went to prepare a bed for her.

June was left alone and after a few minutes the baby started to be born and panic set in with June who shouted for help as she was in an office and there were no other means of attracting the nurses attention. The nurse's took her to the labour room where the baby was born at 7.45am.

After the birth, the staff took the baby a few feet away from his mother and a discussion took place amongst them and  they then asked what was the baby's name. June said that we had not yet decided on a name but at their insistence she said to name him Shaun. The nurse refused this name as it was the name of his father, so June said to call him Brendan which was a name that we had discussed together and which he would have probably been named anyway.

Brendan was then taken away and after a little time was brought back to her, wrapped in a blanket and put into his mother's arms. Within a very short time he was taken from his mother and she never cradled him in her arms again.

 

Brendan's wristband, all that we have of him. Other's had far more of him,  for 28 years,  in fact.

 

In the meantime after being asked to leave the nursing home, I was visiting my parents and other relatives to tell them that I had taken June into hospital for the birth of our child. I arrived home at about 9am and my neighbour whose phone we had used earlier was talking to another neighbour in the street. When I got out of my car I was called over to them and told by the one neighbour that she had received a phone call from the Lydia Beynon nursing home telling me to return there immediately.

I returned to the nursing home and was met by my wife's GP, Dr. Robert Davies who after asking me into one of the office's, told me that Brendan had been born with some kind of defect and that an ambulance had been called and he had been taken to the Royal Gwent hospital.

My wife by this time had been put into a room on her own to keep her away from the other mother's and their children. I went to my wife and after all this time exactly what was said between us is not remembered but I did say that I would go to the Royal Gwent and do what I could for our child. This was the first time of many in the next couple of days that I did not know where my loyalties lay, between staying with my wife who had no child or go the hospital and look after our son. I chose rightly or wrongly to go to the hospital.

Brendan had been taken to the Special Care Baby Unit at the Royal Gwent hospital and on entering this ward and saying who I was, I was taken to a cubicle to the side of the ward and shown Brendan who was lying in an incubator. After spending a few minutes looking at him, a nurse approached me and asked if I would like to see him without the blanket on. Fearing the worst, I declined this offer and said I would prefer to remember him as he is now and not as he really is under the blanket. I promptly broke down and was comforted by the nursing staff.

I was told that a surgeon and anaesthetist wanted to talk to me and I was put into the waiting room on the ward where I spent the next three hours reading the only available reading material there, the telephone book! and thinking that if I knew they were going to keep me this long waiting then I could have been at my wife's bedside in Lydia Beynon.

 

Birth announcement in South Wales Argus

 

Eventually the medical staff turned up and I was told that Brendan's intestine was on the outside of his abdomen and that an operation was necessary to try and rectify the problem. This condition  which was written on June's record and on Brendan's death certificate is known as an Exomphalos. At that time I did not know what the terminology for that condition was but some years later after hearing about some other similar cases, I believed it was called Gastroschisis. Now in April 2004 I have found out that although similar, they are different. See link below.

(Click HERE  to read about the differences in both cases)

 

They said that this operation had its difficulties as there was no space in Brendan's body to put the organ back inside as he had been born with it on the outside unlike a person who had been involved in a car accident, then the space was already there. Further discussion's and signing of forms continued and when I asked them the odds of the operation being successful, they gave me a 50/50 chance, the alternative was that of a Colostomy and the choice of the operation being successful and my son leading a normal life or a life that meant that he would always have a special bag attached to his body was a very difficult decision to make and I chose the operation.

I left the Royal Gwent and went to spend sometime with my wife to explain the problems with our son because even after all the hours that had passed she did not know what was the real problem with our son. I told her a lie that I still regret today in that I said that Brendan had a 60/40 chance of survival although in my own heart I knew that his survival was unlikely. Just before I had left the Special Care Baby Unit, I spoke to the Sister on the ward and asked if she could arrange for my son to be baptised and although I was brought up in life as a Catholic, life had already taught me that there was no God but I had to give my son every chance as there was possible. She told me that she would contact the priests at St. Mary's church in Newport.

Later that day June was transferred herself from the Lydia Beynon to the Royal Gwent hospital and was put again into a room on her own in the the maternity ward at the hospital. In those days the rules and regulations as regards visitors including husbands were far different than they are today and when I was allowed I visited her and after getting permission from the staff on the ward we both went to the Special Care Baby Unit on the floor above and visited our son, now in the main room of the ward in his incubator. He was being monitored for his heartbeat and the rhythmical beat of this machine, beep, beep, beep every second or so, haunted us for many years after when programmes on television featured hospitals with the same sounds.

June, his mother was able through the small window of the incubator to hold his hand and Brendan held tightly onto her thumb. I as his father never held or touched my son, just peered through the plastic glass.

I spent a little time with my wife at the hospital that evening and the sister on the Special Care Baby ward had told me that a priest from St. Mary's church had visited and baptised Brendan. At about 8.30pm I left the hospital and went to the presbytery at St. Mary's church to thank the priest for his services. When I knocked the door a  priest answered it and I told him the purpose of my visit. I was asked in and the priest that baptised Brendan was brought to me. I cannot remember his name and almost immediately forgot it at the time because of the events of the day. He said he was glad I visited and wanted some information for the records. I gave him our details as Brendan's parents and when he asked where we married I said at the Register Office in Stow Hill which was almost opposite the presbytery, he suggested that we should both come to church and get married properly and as I was making excuses as there were more pressing problems, he made other suggestions as to legalising our marriage within the Catholic Church and finally suggested that we fill in a form to be be sent to Rome and have our marriage endorsed by the Pope.

I left the presbytery and went to the fish and chip shop at the top of the hill and  when I arrived home at 9.30pm I sat down and had my first meal of the day. What went through my head for the rest of the evening I cannot remember, not even going to bed, if  I did.

The following day and although after 30 years it is difficult to remember every event, I know that the grandparents of Brendan visited him at the Special Care Baby Unit. June stayed in her room as there was limits to the number of visitors allowed, not only to the bedside of a patient but even to an incubator. During this visit, words spoken by my mother Gwynneth McGuire will never be forgotten. She said to Brendan, "Pull through this son and I'll buy you the biggest and bestest bike in the world" and she would have.

During the rest of the day I had things to do as I was not allowed to stay at the hospital which included visiting my employers to explain the situation. Later that day at 7pm, visiting time, I  again visited my wife at the hospital. I opened the door to the maternity ward and walked down the corridor past the offices where the nursing staff were.

At the end of the corridor was the day room for the patients and on reaching this I turned right and went to the first private room on the left, that June was in by herself. I went in and spoke to June and after a few minutes she asked me if we could go and visit Brendan. I said I would get permission from the nursing staff to take her up to the next floor on the Special Care Baby Unit. I left this room and retraced my footsteps and knocked on the door of the main office and entered. I said who I was and before I could ask if we could visit Brendan I was asked when I had come onto the ward? and that I was immediately to go to the Special Care Baby Unit. It seemed that they had been looking out for me especially and missed me.

I left the office and went to floor above and entered the ward. When I arrived there, the sister in charge was waiting for me and she told me that Brendan had died earlier. Not knowing how my wife would re-act to this news, especially as she had just asked me if she could visit our son, I asked the sister if it was possible that a doctor could accompany me to tell my wife that our son had died. I was told that a doctor was on their way. Nearly one hour later I was told that the doctor was approaching me from behind and when I turned around I saw a female doctor, aged about my own age which was 27 years at that time, wearing trousers and with an open white coat on, that seemed to be flowing behind her and something white in her right hand that again was flowing in the breeze.

When she got to me I said that I wanted her to accompany me to tell my wife the sad news that Brendan had died and that I had been waiting so long for her to arrive that I was extremely concerned as my wife had only expected me to be gone for a few minutes. The doctor said me "will you sign this post-mortem form". This was a document that I had noticed in her right hand as she was approaching me. I said that I wished to immediately go to my wife and break the news to her. The doctor said to me "sign this post-mortem form" and I again said I wished to go immediately to my wife and tell her our son Brendan was dead and I would sign the form after my wife had been told. The doctor again said to me, "sign this post-mortem form, it may help another child" to which I said "give it to me, where do I sign" and was pointed to a place on a form where I put my signature.

We then left the Special Care Baby Unit and went to the floor below to the maternity unit. On entering the room that June was in there was no need for the presence of a doctor and there was no need for any words to say that Brendan had died. I had been away for so long and not the couple of minutes that it should have taken me that June knew that Brendan had died.

Brendan's short life had lasted for less than 36 hours.

June left hospital and came home the following day. Obviously there was something missing in our life and especially to our daughter Nicola who had been waiting anxiously for her new baby brother or sister. Walking down the main road in our area a few days later and pushing a pram, similar to the one we had for Brendan, Nicola said to her mother,

"Never mind Mammy, we can have another baby sometime"

On June 6, 1974 at 10.30am we buried Brendan in the grave of of his great grandmother at St. Woollos cemetery in Newport, little did we know that 28 years later at the same time on the same date and with some of the same mourners, we would be going through the same ceremony for a second time

 In those days it was possible get a burial grant and for the burial of a child it was 9. I went to local undertaker to arrange the burial and they said to me to give them the grant money and they would arrange the burial. I said to them that we wanted him buried in a family grave and he seemed very surprised at this and said most parents with a child this young left them to get on with it. Never the less, even though the cost of the burial was far greater than the grant money as a grave had to be opened, it was the only thing that we as parents could offer our son. I also had to take some documentation and register the birth and death of our son. The Register Office in those days for births and deaths was separate to where marriage's took place. The office was situated in the Crown Arcade in High Street, Newport. When it was my turn, the registrar asked me into the office and asked the nature of my business. I told her that I wanted to register a birth and before I could say anything else, she started congratulating both myself and my wife on our addition and seemed to be very happy for us. I said "and a death" and instantly this lady changed now realising that it was now no more a happy occasion. I must say that the registrar was a very well meaning and pleasant person and it would have been a pleasure for her to register the birth of our son if he had not died.

June and myself had been discussing names for our baby when it was born and although we had no names if it was a girl, the names Liam and Brendan were discussed if it was a boy. June's preference was for Brendan and so it became. In the hospital room that June was in, we discussed the names that I would have too register for the birth and death and we agreed on Brendan but I did say that the only thing that I could give my son now was my name and so his middle name became Sean, but spelt the Irish way instead of the way mine is.

 

Brendan's obituary in the South Wales Argus

 

Some months later in the local newspaper, the South Wales Argus, a scandal broke out where people walking through the St Woollos cemetery were finding the bodies of new born children under bushes and similar and although I cannot remember the exact details, the story ran for sometime.

It was a few years later that we found out that the undertaker responsible for this outcry was the one that buried Brendan and it is possible that if we had not buried Brendan in a family grave then this may have been his fate.

On December 24, 1975 June and myself had the birth of a second daughter Shelley Anne and now in 2004 we are the proud grandparents to six children, including twins (double trouble). Their names are Leah Marie, Riann Lee, James Michael, Cerys Angharad and the twins, Aimee and Rebecca.

We have never forgotten Brendan and visit his grave regularly and since his death, his great aunt Irene has also been buried with him. Any parent's that have lost a child, no matter how long they had them for, will NEVER forget their children.

And so this part of my story about the short life of Brendan Sean McGuire and his family ends but resurrects itself 26 years later.