A message from Carol Messer to you all... (14th August 1997)

To every parent with a child who has HLHS. I feel we have joined a large family, it is a great priviledge. It is hard to believe that we have learnt so much from so much sadness. I had never heard of Hypoplastic Left Heart Syndrome until the 14th June 1996, the disability you cannot immediately see apart from the zips on our childrens tummies. Many of you are further down this difficult journey. Thomas is 1 year and 2 months old and a very happy baby with an 'infectious' laugh and is totally unaware that there is anything wrong with him! We have a daughter Hannah, she is 6 years old. She has coped so well with the trauma of Thomas's illness and has never shown any signs of resenting all the attention he receives. Thomas's other sister is called Rebecca and is 18 and a half. We could never have coped without her. It has been great to know that at every hospital visit she has been there for Hannah and kept things as normal as possible at home. Thomas's big brother Mark, as many of you know him on the internet (Left Heart Matters site creator and looker afterer!). What a son to have! So sorry I haven't thanked him for all the time he has spent on the internet and the great job he has done in linking all of us parents together. He has been a great comfort to me at the difficult times and I can't thank him enough. All the messages received via Mark for Thomas whilst he was recovering from his operation have been such a comfort to us all. I'm afraid I don't know one end of a computer from the other! I can't even type! Maybe in the future we will have a computer for Thomas, so he can link up with other children with HLHS from around the world. At present, Marks does all the hard work keeping us informed of everyones news. We have read all the stories of your brave children. We pray for them all. Ofcourse without the surgeons and their team at Birmingham Childrens Hospital, our Thomas would not be here. What amazing people they all are. Mr Brawn and Dr deGeovanni, I will always be thankful for all the skills you have shared with all these children. Also if Thomas had not been transfered to Birmingham via Edinburgh and in the beginning, Aberdeen for that great chance of life, he would not be here today. To all the doctors and staff that kept his body in the preperation for his first stage operation we thank you. Thank goodness for the National Health Service here in the UK. To Mark, keep up all the good work. I can't thank you enough for all the work you have done. You are a very special son to have. With all my love, Mum x.

A message from Pater Messer to you all... (14th August 1997)

A footnote from Peter.J.Messer, Thomas' father, and Carols husband. Having read what Carol has written and having a moment to think quietly, I would just like to say: Since Thomas arrived on June 12th 1996, our lives have been altered beyond all recognition. From the euphoria of his birth as with every parent, to the emotional wilderness we found ourselves in upon learning of his cardiac abnormality, later to be told he has HLHS. What to think? What to do? We didn't have a clue how serious it was, until we were given two very heart rending choices, which were "You can stay with him until he fades away" OR "There are three heart surgeries available which could save his life". Suffice to say that the latter was the ONLY choice for us. I was sceptical if truth be told, because I suppose of my fear for the unknown. But I will back my wife up completely as she has been an absolute rock in many decisions over the years, and I'm happy to say I didn't hesitate over our choice of the second option. Bearing in mind I was ill at the time and of no use for anything, Carol was and is very strong, and its largely thanks to her courage, devotion and love for Thomas that we have all come down this very long and emotional road together. Its quite obvious that from day one, Thomas has inbuilt strength and courage that would put many adults to shame. Have read some of the things on the internet from Carols son Mark, and many parents of HLHS children, I know we are not alone. We pray for all of you, knowing as we now do just what it takes for parents like us to cope. I'm very proud to be Thomas' father, and may I respectfully add, Hanny our daughter who is now 6 years old old fills me full of pride too. She has coped exceedingly well bless her. Obviously I cannot continue without a word of thanks to Mr Brawn and his amazing cardiac care team at Birmingham Childrens Hospital. Without whom none of this would be written now. Thomas was returned to us because of the skill, profession, dedication and knowledge of the afore mentioned, not forgetting Edinburgh Childrens Hospital and Dr Bruns, and last but not least Aberdeen Hospital (Forrester Hill) and their Dr Booth who has been most helpful and reassuring. I would also like to express our deep thanks to all our neighbours and friends, also Gran and Grandad for their continued encouragement and support without which coping would have been more difficult or albeit IMPOSSIBLE. Thomas is a happy, smiling, caring little boy, very alert and eager to play to the gallery he has a super laugh which is catching and always has a mischevious glint in his eye. We just know he is going to be loads of fund (and trouble!) as he gets older. We love him dearly and anything he needs or wants, he will have. Thanks you to everyone for yuor thoughts and prayers: May your god go with you. P.J.Messer xxx

You came into this world at 5:12am on the 12th June 1996, a boy, just what your Daddy wanted! You weigh 8lb 6oz. We both gave you a cuddle and all seems fine. We arrive on the ward and you have mucus and your temperature drops a little, your heart starts to beat rapidly. It is now about 10:30am. They take you to the noenatal unit for observations. I ring your Daddy and sisters to let them know what is going on. They think you have a heart murmer, and then pneumonia. It keeps changing. Then they discover you have a heart defect. Daddy arrives, Becky (oldest sister), Hannah (younger sister), Nanny and Grandad. They all see you in your incubator all wired up. It is now 3-4pm. By 7pm you are in the ambulance on the way to Edinburgh for a second opinion. Daddy is following but he is very ill during the journey due to pills taken for a bad back. The police drive him to the hospital, Simpsons hospital. You arrive at 9:30pm. You were very good on the journey. On arrival you are scanned again and put in another incubator. Your Daddy arrives at about 11:30pm looking awful. The consultant tells us what a sick little boy you are and that there is a very long and hard road ahead of us all. Mummy and Daddy try to get some sleep but can't. Daddy goes to Accident and Emergency to check himself out, he is dehydrated. I visit you and they are getting you ready for possible surgery. You look more peaceful now as your chest is now going at a slower pace. The consultant sees us again to make sure we understand exactly what we are going to put you through. I know you can make it.

We must be strong for you. What a team of dedicated workers, how will they do it? They decide you can be transfered to Birmingham for surgery, the only hospital to do this operation in Europe. To do this operation a team will go with you in the plane. You have a police escort through Edinburgh to the airport. You leave at about 6pm. We leave at around 7pm. I am going home to pack my things and thoughs together. Rebecca has been wonderful. Nsnny has been here looking after everything. We arrive back home at about 9:30pm. We ring Birmingham Hospital. You were very good on the flight. 11:30pm, Margaret who went with you on the flight has just phoned to say all went well. I am going to bed now, a busy day tomorrow.