Diary Page

We will use this page to show you everything we have been through, the most recent entry is also on the latest news page

07/05/2002 12 week scan - The Gwent 
Nothing out of the ordinary found

19/06/2002 18 week scan - The Gwent 
Most measurements normal, however we were told that the baby was lying on its tummy which meant that they couldn't see the heart chambers or umbilical cord properly. We were told there was nothing to worry about but to come back in a couple of weeks for another scan.

04/07/2002 18 week follow up scan - The Gwent 
Again most measurements normal, but this time a lot more interest was being taken in the heart. After around 20 minutes, we were told that they still couldn't see the heart properly and would like someone else to have a look as well - a fresh pair of eyes. We were told to go and have a cup of tea while the Doctor was contacted and to allow the baby to change position - again nothing to worry about. We went for our cup of tea but we were starting to worry by now. An hour later we were seen again, this time by a Doctor and the original nurse. The Doctor and radiographer were discussing the scan and asking each other whether the machine could record a video. Sarah at this point knew there was something very wrong and started to cry. The Doctor then switched the scanner off and came to tell us what she knew. This was basically that there was a heart abnormality, some fluid around the lung and a thickening at the base of the neck. She didn't know the implications of these findings and she would need to refer us to a foetal heart specialist in the Heath in Cardiff. As this was a potentially very serious problem she assured us we would be seen very quickly hopefully the next day. We went home in a daze.

05/07/2002 The Wait 
We had a restless night!! At this point we were still in the dark as to what the problems were, all we could do was wait for the phone call about the appointment and try not to think the worst. The phone call came at about 11:00 am, we were told that they were sorry but we couldn't be seen until the following Thursday a whole week of knowing a little and imagining a lot. We were assured that Thursday was the best day as it was foetal medicine day in The Heath and all the experts would be there.

11/07/2002 The Heath 1st Scan 
After the worst week of our lives, we were greeted at the Heath by a fetal cardiac doctor who explained what he was going to do and that there would be lots of technical talk but he wanted to find out exactly what the situation was so that he could give us the full picture. We sat and watched and listened to him as he gave verbal measurements and readings to his assistant who wrote it all down. We heard the terms ventricles, morphollogy, atresia, pulmonary stenosis, hypoplastic, atrium, tricuspid valves, dextrocardia…… it sounded like a biology lecture!! After an hour of scanning the Doctor got a pen and paper and proceded to draw diagrams of healthy hearts and his diagnosis of our baby's heart. This was that the heart only had one pumping chamber (ventricle) and that both of the main ateries (aorta and pulmonary artery) were coming from this one chamber. The pulmonary artery was slightly narrowed (stenosed) and the heart was pointing to the right rather than the left (dextrocardia). The receiving chambers (atriums) had no dividing wall. He then explained the implications and the corrective surgery that would be necessary as well as success statistics of each operation. The news wasn't the best we could have hoped for but it wasn't the worst either, there was a good chance that the baby would survive and lead a fairly normal life. (See The diagnosis page)

12/07/2002 The descision 
We were given the weekend to think about what we wanted to do (although terminating the pregnancy seemed a bit of an afterthought to the Doctor, he seemed very positive about the course of treatment). From our point of view we felt that as the baby's body had adapted itself to its limitation to survive this far, that we should carry on and give him a chance.

08/08/2002 The Heath 2nd Scan 
The same Doctor met us once again and talked about how we were and how we were coping, he then scanned Sarah for another hour and gave us more details of his findings. These were that he was slightly more concerned about the pulmonary stenosis. We were offered a chromosome test to establish whether the heart problem was caused by chromosome abnormality. It was explained that there was a 1-2% chance of a miscarriage and possibly further harm to the baby because of this procedure. We asked what could be done if any abnormality was found and were told that there was no corrective treatment. We decided that it was not worth the risk at this point as they could find out everything more easily once the baby was born.

05/09/2002 The Heath 3rd Scan 
The third scan basically confirmed everything that we had been told so far except that the pulmonary stenosis was not getting worse. We were asked where we would like to deliver the baby. We could deliver in Cardiff, Newport or Bristol. We decided that as the operations would need to be done in Bristol, the first one possibly within hours of birth that it would make sense to go there and stay there. We couldn't fault the care and attention of the staff in Cardiff but they didn't have the ability to do the operations. We were then given another scan by the normal radiographer who confirmed that all measurements were normal and that no trace of fluid or thickening of the neck could be found. An appointment was made for us to visit the Bristol team and look around the childrens hospital to get more comfortable with what we and the baby would be going through.

10/09/2002 Bristol 1st scan 
We were scanned in Bristol firstly by three people, 2 consultants and a foetal heart specialist. They told us that they couldn't wholly agree with the original diagnosis, they had discovered that the stomach was on the wrong side. They explained that heart specialists use the stomach as a marker to get their bearings and often assume it is where it should be i.e. on the left, to work out which way round everything is. Although this meant that the heart was actually pointing to the left and not the right, the rest of the prognosis by the original Doctor was correct, the 3 operations that had been outlined would still be necessary. Once again we were bewildered, we knew before that things were complicated but we thought we knew exactly what would be done, now suddenly the stomach was on the wrong side which had not been spotted in the 7 other scans. The stomach being on the wrong side meant that a small operation would be necessary to prevent the gut from twisting later in life. It also means that isomerism is more likely (see medical terms page). They also discovered fluid around the babies lung and some extra fluid in the womb. They asked us to come back in two weeks to check on the fluid. During the afternoon we were given a tour of the childrens hospital by the cardiac liason nurse and we were pleasantly surprised at the relaxed atmosphere and spacious surroundings even in intensive care. It is a new hospital and has been very well thought out and is a pleasant place for children to be, rather than the standard reception desks and green walls, the nurses station is in the middle of a large space, shaped like a ship and with cartoon characters all over the walls.

11/09/2002 Phone call to Cardiff Doctor 
Sarah phoned our Cardiff Doctor to express her concern about the findings. He arranged for us to come in the following day for the Cardiff team to reasses the situation.

12/09/2002 The Heath 4th 5th and 6th Scan!! 
We went to the ante natal clinic for a normal scan for measurements of everything (each time we do this, the measurements they take suggest that the baby is a couple of weeks more developed than his age - looks like he is going to be big). They established the position and orientation of the baby using a cuddly 1 legged penguin!! It can be very difficult to work out where the organs are because the baby can be in any position inside the womb, so if it is upside down and facing away from you, which side is his right? So they use a cuddly toy with one leg and put it in the position the baby is in, that way they can easily see which is right and left. They confirmed that the stomach was on the right, they also confirmed the presence of fluid but said that it was minimal and nothing to worry about, the fluid in the womb was increased but again nothing to worry about. We then went to see our obstetrician who we are officially under for our ante natal care he went through the potential reasons for additional fluid and scanned Sarah again, he also said that the amount of fluid was insignificant. We moved on to the fetal cardiac doctor who again went through the 5 reasons for additonal fluid, these were 1 - a failing placenta 2 - a weakly pumping heart 3 - a chromosome disorder 4 - Blocked oesophogas 5 - No kidney 6 - an infection (this was the most common). He then proceeded to measure just about everything, Blood flow across the umbilical cord - normal, Blood flow from kidney - normal, Blood flow through the heart - normal, everything he measured and scanned was normal. We were reassured that although the stomach is on the wrong side, the fluid appeared to be nothing to worry about (we had enough to worry about as it was). He re-iterated that the operations and chances of success were the same as before. We came away from Cardiff feeling much more positive again. We now know where the phrase 'emotional rollercoaster' comes from.

19/09/2002 The Heath Glucose test 
Sarah had been advised that she should take a glucose test as both of the previous 2 babies had been quite large and this is sometimes caused by excess sugar. We arrived at the Heath at 8:30. Sarah had blood taken straight away and was given a sugary drink. We went for the normal ante natal scan once again where they looked closely at the fluid around the lung which was still very slight. We returned to see Mr Beattie who discussed the possibility of premature delivery which isn't a good thing in a baby with heart problems. The only thing that wouldn't be prepared were the baby's lungs and this could be rectified now by having two steroid injections. These basically speed up the development of the lungs. I went to the pharmacy to collect the injections while Sarah had the second part of her glucose test.

24/09/2002 Bristol 2nd Scan 
Second scan was much more positve. The fluid that had been detected on the first scan had not increased and therefore there was no need to bring forward the delivery date. All other tests were normal, and we were asked to come back in four weeks at which point we would be told delivery dates and the plan of action.

03/10/2002 The Heath 7th Scan 
All measurements were normal except that the baby is the size of a 36 week and 4 day one whereas ours is only 33 weeks and 5 days!! We asked whether this meant that the baby would be born early but were told no, it just means that it is bigger than average. Fluid around the left lung was still there but insignificant and the slightly higher than normal fluid in the womb was again noted but not of concern, we were asked to go back in two weeks. That means a whole week with no scanning, the next one is at the Heath on the 17th and then at Bristol on the 22nd

17/10/2002 The Heath 8th Scan 
All results were normal with the radiologist being unable to find any trace of fluid around the lung and the fluid in the womb being normal. The size was the interesting part, they calculate an estimated fetal weight (this is the weight now not when it is born) by a combination of the length of the femur and the circumferance of the abdomen. The scanning machine gave a weight last time but this time did not, when questioned the radiologist informed us that it was higher than the machine could estimate and we would need to use a manual chart. The doctor did this for us and calculated the weight to be 9lb 10oz!! we still in theory have 3 weeks to go. Stephen was 8lb 11oz and Scott was 9lb 10oz. Sarah thinks she had better have him tomorrow! Next appointment is in Bristol on Tuesday 22nd when they should give us the starting date.

22/10/2002 Bristol 3rd Scan 
The scan at Bristol confirmed last weeks finding that the fluid around the lung had now gone. The measurements were very different though, much to Sarah's relief the baby is estimated to be 7lb 8oz at the moment and not 9lb 10oz as was thought. We have been given the date of the 6th of November to go in and be induced. This is dependent on Special Care baby unit having a neonatal cot available. Stephen and Scott came with us for this scan and were shown the baby's face and spine. They also went for a look around the children's hospital so they know what to expect when visiting.

03/11/2002 Thank you 
A few lines before we step into the unknown next week to say a huge thank you to all of you who will be dialling in and reading these notes during the coming week. Each one of you, by looking on this site has given Simon and myself some encouragement for the difficult weeks ahead. We have lived through the trauma over the past few months knowing that it will intensify before it resolves. This part of the process is about to begin. We have spent a lovely weekend with the boys doing simple family things, as it will be our last chance for a very long time. “Excitement” cannot be the word to describe our feelings at the moment – “apprehension” better fits the bill, which is the best attitude we can adopt in waiting for the birth of Sam. Optimism seems too positive – we just don’t know what the coming weeks (and even then the coming years) will bring in Sam’s fight to survive. Strength to face each day will be vital, although it seems to be failing me already at times! For this reason, the answer phone may greet you for the next few days; please know that this is no personal reflection. Do leave words of support on the WEB page or via e-mail or on the answer phone and they will help in giving us the strength we need. Remember that by not responding, we have not forgotten you but simply have more pressing concerns for a little while. We feel thankful to have so many supportive friends and family members, and so many genuine offers of help. For the first time ever the words “thank you” seem so inadequate! We almost feel guilty for dragging everyone through this.

07/11/2002 7:00 am - no baby yet 
Sarah was induced at 10am yesterday and started with small contractions, she was given another tablet at 4:00pm and by 10 pm the contractions were severe enough to be taken to the delivery suite. However the baby had not engaged sufficiently and a further 5 hours of contractions were to no avail. She was given an injection to take awawy the pain and let her sleep at 3:00 am this morning. She had a couple of hours sleep. The contractions are still there and we are now waiting for the doctors round at 8:00 to find out what happens next

07/11/2002 Sam born 11:40 am 
Sam was born this morning at 11:40, weighing 8lb 8oz by normal delivery. He was then taken away to the special care baby unit intensive care. We caught up with him 4 hours later. Sam has lung difficulties as well as the known heart problems. They are currently trying to stabalise him prior to potential surgery on Saturday.

08/11/2002 Sam born Yesterday 
Sam was born this morning at 11:40, weighing 8lb 11oz by normal delivery. He was then taken away to the special care baby unit intensive care. We caught up with him 4 hours later. Sam has lung difficulties as well as the known heart problems. They are currently trying to stabalise him prior to potential surgery on Saturday. 16:30 update - Sam was taken down to the New Children's hospital at 2:00 where his condition deteriorated. They are still unsure of the actual reason for his condition and have taken him to the cardiac catheter lab. where they are going to try to find where the flow of blood goes from the lungs using a dye. If this fails they will need to use a catheter which increases the risk to Sam. We had him baptised this afternoon.

08/11/2002 07:30:00 Goodnight Sam 
Following 3 hours of tests we were told Sam's condition was inoperable, the best that could be done was to keep him comfortable and even then he would die. The Doctors felt that the lung veins hadn't developed enough to take blood back to the heart. This could not be treated with surgery. We made the decision to switch off the ventilator and he died in Sarah's arms at 7:30. Thank you for all your good wishes and thoughts, we are sorry to have to bring bad news. We realise that many of you would like to talk to us and visit us but we need a little time to come to terms with this ourselves first. Please bear with us, we will update you next week after the post mortem.

Simon and Sarah

12/11/2002 Funeral Arrangements 
Sam will be buried at St. Marys Church in Rogiet on Friday 15th November at 11:00 am. Could we please request family flowers only. If you would like to make a donation in lieu of flowers, we will be giving all monies raised to the Wallace and Grommit Appeal which will benefit all children in the Bristol Hospitals where Sam was treated. There will be refreshments after the Service at our home and we would all appreciate you coming along to help us through this difficult day.

25/11/2002 Funeral News 
The attendance at Sam's funeral was overwhelming, with over 70 people almost filling the church for the service. Our house was also filled following the service (standing room only) as most people joined us there. As very few mourners had actually known Sam, we really appreciate the fact that the support was for our family as a whole. We are also grateful to all the people who have continued to keep us busy during the days since the funeral. The physical support was matched by financial, with donations to date reaching the total of £531.92 which will go to the Wallace and Grommit Appeal helping all the children treated at the Bristol Children's Hospitals. The account will remain open for another 4 weeks, so anybody wishing to add to the total can either contact us or send cheques to Philip Blatchly and Son (Funeral Directors) Limited Highcroft House Woolaston, Lydney, Gloucestershire, England GL15 6PN

07/05/2003 6 Months 
Our little boy would have been 6 months old today, and we would have been celebrating with family, friends and half a cake, as we did with Stephen and Scott. Celebrating his precious life, especially so as the date for his second heart operation would be just around the corner. Although Simon and I still would not change our decision to give him every chance, we are not sure which would have brought the worst upset - watching Sam go through each painful hospital visit, or experiencing this everlasting grief and devastation. Six months after his loss, living without him is still hard work every single day. Making plans without him, seeing other parents with healthy babies, all helps to make us feel desolate and cheated. I frequently find it hard to find the energy to keep the strings held tightly together but the four of us have become a stronger family unit. Fortunately the boys talk about Sam openly, and we don’t need to hide our emotions from each other. I am so absorbed in our home life, that often the outside world is too frightening to be a part of. Friends are thankfully still rallying around us – without them I certainly would become reclusive. Their donations towards the collection held in Sam’s memory totaled £800, which the Grand Appeal used in the purchase of a Baby Breathing Ventilator for the paediatric intensive care unit, the piece of vital equipment that kept Sam alive for his short 32 hours. This, and the strength of the newly found love that surrounds us, are the first positive things that have come of this sad episode in our lives. There are many thoughts of future fund raising for the new Children’s Hospital in Cardiff with the “Noah’s Arc Appeal”; cycle rides, garden parties and music quizzes. Unfortunately even with the new hospital, children like Sam will still have to travel to Bristol for treatment, but hopefully in time to come Wales will be able to offer these facilities as well. However for now, we are still recovering our sense of balance – some days it’s in sight and on others it’s further than remote.

07/11/2003 Sam's 1st Birthday 
Where do I start? I decided initially that I wouldn’t make this entry, but then read all the messages that are still coming through from as far away as Canada and Australia! An average number of 146 people are visiting this site each week. I am overwhelmed that so many of you are still keeping a look out for us - cards and flowers arriving all week too. We feel very lucky to have so much love all around us. I could not just let this day go by without showing how much we appreciate you all, or updating you with our progress. Somehow 12 months has gone, but I’m not sure how or what we have done with it. We bought a trailer and tent, and spent most of the summer camping in various places, and we started rearranging the back garden quite drastically (but at the moment it just looks drastic!). Otherwise I cannot say how we reached this date other than by one day at a time, taking a lot of time out of work and being carried along by caring friends. Some days have been tough, but on the whole most of our days are getting easier. Mountains have been climbed but there are many more ahead. For me, the biggest step was holding a baby boy again – thanks to Becky for trusting me with him – but sadly it hasn’t taken away sense of loss or the anger that wells up when I see other babies when I’m out. I desperately want to conquer this awful feeling, but then I see Sam’s photo and know I have a right to feel cheated…of the chance to show him the pretty Autumn leaves and soon the Christmas lights, of hearing him giggle with his brothers, of giving him a Birthday present and then cuddling him to sleep. Well it’s taken me about an hour to write this and accumulate a pile of soggy tissues, but I am determined to end on a happier note. Apart from today being a very emotional one, the last few weeks have been slightly more hopeful as we are expecting our 4th child. We cannot be as positive about this as perhaps we could be, but we have everything crossed. The risks of any heart defect have increased to 4%. Sounds so small and yet the chance of losing Sam the way we did were just 0.01%! We are due for a scan just before Christmas to let us know whether everything is OK. It will be a very long and difficult pregnancy and perhaps make some issues worse rather than better. While it certainly will not take away the pain of losing Sam, it may give us direction and a new purpose in life.

07/11/2006 Sam's 4th Birthday 
Sam would have been four years old today. And although four years has somehow gone past, and our lives are moving forwards, he is thought about every single day. He is missed every single day. And as yet still no answers to our question …why? …and still no reasons for his loss. Still searching. Despite this perpetual search, the effects of his loss have meant change in many aspects of so many other lives – and for the better. And not just at the immediate family level – yes we are all much closer, more appreciative and more tolerant of life’s little “quirks”. The WEB site is still being a source of information and comfort to so many people world wide, it gives us such pride in Sam for making this possible. We have, as I mentioned, moved forwards in many ways. Firstly, the birth of our daughter Stacey. She is nearly 2 ½ now and a proper little miss! Bags of fun and a real little treasure. She has been my personal saviour and she’s given the whole family so much pleasure. Secondly, we have moved house – a huge upheaval physically and mentally. Leaving Sam’s home behind was such a hard decision, and many a tear was shed. However I now realise that it was the best thing we could have done, in order to make the next steps forward with our life. I feel less burdened here, it’s a new start. And I don’t feel apart from him as I had imagined. He’s in my head and my heart all the time. The void in my life is now almost filled with Stacey and the new house – or should I say garden! We have an acre of land and lots of plans! The boys are doing really well in school (if showing the usual teenaged laziness) and seemingly growing taller daily! Simon is still working hard and the business thriving, despite a shaky start to the year - just as we take on a new house and mortgage!! I’m at home with Stacey and making the most of our time together. She’ll soon be off to nursery, and I’m already planning my time – a good sign. On another positive note we are planning a fundraiser at the end of November – a “Quiz and Curry Night” in the village hall in aid of the Wallace and Gromit Appeal. For the first time in 4 years I feel strong enough to stand up for the values Sam has bestowed on us, and have the enthusiasm to use this towards something positive. I finally feel like I’m finding the old Sarah again. At least most days - today is not one of them.

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