As I write this account, I can only hope that by reading it, someone else's baby might be saved and his/her parents will spared the heartbreak that my husband, Daren, and I have suffered.

The condition of vasa previa ( praevia ) has robbed us of our beautiful baby boy, our first child and we will never be the same again. We miss him so desperately. We just wish that one of the medical staff treating us had had the foresight to scan me for this condition.

I now know that a 30 second transvaginal scan using colour Doppler would have diagnosed this condition during my pregnancy. Had that been done, our son would, in all probability, be here today.

The death of our beautiful baby boy was an avoidable tragedy.

Background – Fertility Treatment

Daren and I had longed for a baby for a very long time. I underwent various fertility treatments over a period of 4 years. None of these treatments were successful and eventually we were advised to undergo IVF treatment. We were told that was our last resort. We had our worries about IVF, but our longing for a baby was so strong that we decided to go ahead.

I attended for my first IVF cycle and scan before Christmas in 2004. Unfortunately I was told I had a cyst and therefore I was unable to go ahead with IVF at that time. I therefore waited until the following January and received the good news that I could now go ahead with IVF treatment as the cyst had disappeared.

We were truly blessed to have success on our first attempt at IVF. They managed to harvest 10 eggs, which is a wonderful amount. 8 of them were fertilised which was just fantastic. They were able to let the embryos develop to the Blastocsyst stage and the “best” two embryos were implanted on day 6. It was then an anxious wait until we could carry out the pregnancy test.

The test was due a couple of days after our tenth wedding anniversary. We were thrilled to discover that I was pregnant. We had gone through so much to get to this point so we tried not to get too excited until we had the 6 week scan at the hospital to confirm that a heart beat was present or possibly two heartbeats!

At that first scan we were absolutely overjoyed to see one little heartbeat fluttering on the screen. Although IVF treatment is unpleasant, the reward after a successful attempt is worth every part of the process. Nonetheless, we kept our excitement to ourselves as we were well aware that there are many things that can go wrong in the early days.

I went back for another scan at the IVF hospital at week 10. All was well and the baby now looked, well, like a baby shape! They discharged me after that scan and wished me all the best.

I had tried to see whether I could continue my care with that hospital and in particular with the Consultant who had been responsible for my care until that date. I was happy to do this privately as we had indeed paid privately for my care up until that point, however I was told the hospital rarely look after patients throughout their pregnancy and as I did not live in their area (central London) it was more usual for me to take up pregnancy care in my local area, with a local hospital. I must say that after 4 years of receiving fertility treatment it was a little strange to be outside of their care, however I was reassured that my pregnancy would be like any other and there was no reason for me to be treated any differently. (I now know that conception via IVF treatment forms one of the risk groups for vasa previa, of course I did not know this back then and it was not in any of the literature I was given).

As an aside, in the time that has passed I have questioned whether IVF was the right thing to do. Are you interfering with nature?, and all the other arguments etc. I now realise that, without it, we would not have met our most precious and beautiful son. With his creation our lives were changed forever. We were blessed to have met such a beautiful and brave baby boy and to be his mummy and daddy. I have poly cystic ovaries and I underwent over 4 years of unsuccessful fertility treatment. I do believe that our only chance to become parents was through IVF and although my heart is now broken I would not have missed the chance to have met and loved Henry.

Early pregnancy

My pregnancy progressed very easily in the first 11 weeks. I was pleased that I did not suffer from morning sickness. I just felt very hungry all the time and tired! I slept for hours on end. I just willed myself to get to 12 weeks and then we would be able to share our exciting news. Everyone always warns you not to get too excited during those 12 weeks as so much can go wrong.

Bleeding in pregnancy

Just after 11 weeks I started to suffer from painless bleeding. It started with a very small amount of old blood and then it became much more. We were obviously very anxious about this bleeding and we feared that it was a sign of miscarriage.

We went to the A & E department of our local hospital and we were told that if it was a miscarriage “..there was nothing that could be done..”. The doctor was probably right, but he was very blunt, blunt to the point of being rude and insensitive. These were very frightening times for us and we were panicked. Daren read every book we had, all the “ parents to be” books, to include; “ what to expect ” and Dr Miriam Stoppard's book, to name but a few. Sadly vasa previa was not mentioned in any of those books. We did not know that I ticked most of the boxes for most, if not all of the warning signs and/or risk factors for the condition.

Because the bleeding was so heavy we had to attend the hospital twice on that Saturday. I cried buckets of tears and was so very worried.

We went back on the Sunday for a trans-vaginal scan and to our great relief we saw a heartbeat. The hospital does not carry out scans at weekends but thankfully we were able to find a doctor who would scan me on the Sunday. We were so relieved that the heartbeat was still present. Though this was a transvaginal scan, no effort was made to do anything other than look for a heartbeat or to look for the cause of the bleeding.

Our relief was again shattered when I lost a lot of blood on the same Sunday evening and so we went again to hospital on the Monday morning. Again I underwent a scan, this time an abdominal scan, and again thankfully the heartbeat was present. This time they said that the scan showed an area of bleeding, but they did not understand what was causing it.

It is a sad fact that in the UK , obstetric “professionals” seem happy to leave bleeding in pregnancy as undiagnosed, in the hope that it will resolve itself. “..Bleeding in pregnancy is normal..” we were told. We have come to realise that what they meant was bleeding is relatively common – it is not of course NORMAL and should never be treated as such.

I next attended, at 12 weeks, for a private nuchal scan. That day the baby was laying in a difficult position for them to scan, but they eventually managed to do so and confirmed that all seemed well. I told them I was suffering from bleeding but as I was there for the nuchal scan only, they did not investigate the cause of the bleeding.

I went about my normal routine but the bleeding did not subside. In the end I was admitted to hospital to be monitored. This was only after I had lost a significant amount of blood. I now know that the blood lost should have been tested to see whether it was fetal blood. This was never done and no one suggested that it should have been done.

I was continually told that I should not worry. I was constantly told that “..bleeding in pregnancy was normal..”, and that it would hopefully stop by 20 weeks, and so when the bleeding seemed to resolve itself by then I had no reason to doubt them. How wrong we all were.

In the interim I had been so worried that I spoke to my IVF Consultant about the bleeding and she told me that it was probably the other embryo, which had not survived, being expelled.

I had also spoken to a Consultant at my NHS hospital. He told me everything would be fine but in any event that there was nothing that could be done until I reached the 24 week stage. He offered me the chance to attend a private “reassurance scan” at 18 weeks, which I duly did. He scanned me abdominally, thoroughly, or so I thought, and told me that all seemed well. By then the bleeding had just about stopped.

To be fair as things progressed, there were some days where I lost no blood or a very small amount of old brown blood, however on other days I lost large quantities of fresh bright red blood. This continued until about 18 weeks plus a few days, and so when finally there was no obvious bleeding, we were reassured that perhaps we (Daren and I) had been a little “hyper” about the whole thing.

Mid – Late Pregnancy & Further signs of Vasa Previa

Though we suspected something was wrong, we were always relieved to be told by a number of medics that bleeding in pregnancy is quite normal and that we should not worry. We now know that this is incorrect, but at the time we had no reason to question this reassuring advice. I now feel that the doctors should have properly determined why I was bleeding during my pregnancy. They let me down and worse, they let Henry down, in not trying to diagnose this bleeding.

They should have checked whether it was my blood being lost or the baby's blood, we now know that these are very simple tests.

I had a 20 week anomaly scan. In fact I had two, as I had to go back 2 weeks later as they were unable to examine the baby's heart properly at the first 20 week scan. I was obviously worried. I was reassured by the results of the 22 week scan. I was told that the baby's heart was fine.

Because of my occupation, I would describe myself as an anxious patient and with all that had happened I would also say I was an anxious parent to be. Daren was the same. I underwent 18 scans during my pregnancy. The last scan was less than one week before our baby was born. This last scan, and several others, was performed by my Consultant. I was told after each scan that all was well. Given that it is usual to have just 2 ultrasound scans during any pregnancy in the UK, and that we had paid privately for a nuchal scan at 12 weeks , a private “reassurance” scan at 18 weeks and that I was also regularly attending antenatal appointments with a Consultant, I believed I was receiving the best care available and certainly much more than a standard pregnant woman in the UK would receive, so how could I question this advice?

During the latter stages of my pregnancy I had a further comparatively minor episode of painless bleeding (at week 34). There was very little blood lost on this occasion. Again, as it resolved itself, I was told that all would be fine. Nonetheless no attempt was made to determine the cause of this bleeding and no one even thought to ask me to have an anti D injection. (As I have rhesus negative blood, I should have received this injection at the first sight of any blood along with the standard two injections of anti-D at 28 and 34 weeks).

Late pregnancy

My pregnancy progressed and I grew to be enormous. As with all mothers to be I was anxious to finally meet our baby. Given that we had had IVF treatment I was confident of my due date, but I in fact went to 40 weeks plus 3 days before my waters seemed to break. Having gone that far, and after thinking I was going to lose the baby at 11 weeks, I really didn't think there was anything to worry about, aside from how I would deal with pain relief during labour. How wrong I was.

Labour

My waters broke initially on Saturday morning, and Daren (beside himself in excitement) drove me to the hospital. Given my description of what happened and no doubt my history, I was kept in and monitored. Looking back it must have been my fore waters that went rather than an actual rupture of membranes.

I was examined internally by a midwife and again by a doctor, they both told me I was not dilated. (I have now been told that when I was examined internally by the midwife and doctor on that Saturday morning, that they should have been able to feel an obstruction over the cervix, in other words they should have felt that there was something wrong.) If they had done so, our son may well have been saved. However all they seemed to be worried about was whether my cervix had begun to open.

I did all the things I was advised to by the midwife to try and get my labour moving. I walked round and round and up and down the stairs. I bounced on the bouncy balls provided in the room. I was anxious to try and make my labour as easy as possible. We had taken on the advice that we had had from all our NCT and antenatal classes, every one had advised me to keep upright and active.

This was the day I had waited for, for so long, but nothing further happened, so I was moved up to the labour ward and was surrounded by the sound of crying newborn babies and Daren was sent home (but only after he was assured that we would both be consulted in matters concerning mine and our baby's care). That night I watched TV alone and struggled to sleep because of all the babies crying. I was nervous but excited. I was given some antibiotics in the middle of the night.

Sunday 13 th November 2005.

Sunday 13 th November 2005, started as the day before had ended. As I had not progressed in labour, I was induced using a gel (not the drip). Contrary to the assurances he was given, the hospital made no attempt to contact Daren or to advise him that I was going to be induced or how. When he arrived at the hospital and discovered this he was furious that I had been induced without a proper consultation and, it seems, with good reason, as induction with gels like the one used on me is totally contra indicated for those with vasa previa (of course he did not know that then, but he does not forgive himself for leaving me alone in the hospital).

As advised I continued to be active and to try and bring on my labour. I did not really have any labour pains, but I felt continuous period like pains and occasionally these were severe pains. It did not yet feel like I was in labour but I was expecting and hoping to feel pain, as that would be a sign that I was in labour, and that I would soon meet our baby. I told the midwives what was happening and they took very little notice.

The whole day passed and then whilst I was sitting on the bouncy ball in the early evening I suddenly felt like I needed to lie down. I felt a really strong push down by the baby and I knew I had to lay down on the bed.

Then my waters broke with full force. I lost a huge amount of clear fluid I had completely soaked my bed and my clothes. Daren went to tell a midwife straight away. She did not seem that interested and took her time to come over, (she was the same midwife who had failed to examine me properly the day before). All through my care she failed to have any urgency about her.

Daren and I were laughing in a nervous, but excited way, as now hopefully labour would start properly and we would finally get to meet our baby and go home as a family, we had had enough of the hospital by now.

We were also anxious to know whether were going to have a little boy or a girl, we had not found out sooner as we thought it would be a great surprise, although all throughout my pregnancy I had been secretly convinced I was having a boy. We wanted to see him, hold him and see that he was ok.

I went to get changed out of my wet clothes and when I came back the midwife had arrived and she was changing the bed. I stood and waited for her to finish and whilst standing I felt a further sudden gush of water. However, because of the undiagnosed vasa previa and velamentous cord insertion, this was not my waters, it was blood and huge amounts of it. We now know that the baby had lost an enormous amount of blood because when my membranes ruptured the umbilical cord (or a vessel of it) also ruptured as his head pushed down. Our poor baby boy, what a way to come into the World.

From this point on everything seemed to move in slow motion. I was aware that blood was a very bad sign, but poor Daren just thought it was part and parcel of labour. I was crying. A doctor was called but it seemed to take forever for him to arrive and then he examined me, internally, in the most painful (and contra-indicated) way, he then made the decision to perform an emergency c-section. I already knew that I needed a c-section and I knew I needed it straight away. Valuable time was wasted waiting for the doctor to arrive and to reach a decision that I had reached over 15 minutes earlier. Daren recalls that when the doctor examined me, his hands were covered in dripping blood and his face was full of horror.

The midwives pushed me out of the ward, down to the lift and then into the operating theatre. It seemed that all of this was a dream. I was having an out of body experience and this was all happening to someone else. It was all moving so slowly. I just kept begging them to get my baby out. I knew that “time” was very important and that the baby risked brain damage if he was starved of oxygen. I was so scared.

When we were finally in the operating theatre I remember how Daren had to shout out for the doctors to hurry up. Though they seemed to realise that it was important, an emergency, no one really seemed to want to take charge.

I was given a spinal, rather than a general, anaesthetic because I had eaten shortly before my waters had broken. I now know that this decision was made because the baby's heartbeat had risen temporarily in the operating theatre, but just after that decision his heartbeat plummeted again, they made a life or death decision for our baby and they probably made the wrong choice. Given the huge quantities of blood the baby had lost already, I do not really know whether this decision made any difference, but it certainly slowed them down.

Henry Cameron Samat

Our little baby boy was born at 7.15 pm on Sunday 13 November 2005. He was born gasping for air and he was clearly a very sick baby boy and he was immediately passed to the team of paediatricians. We have been told that he was very white through the massive loss of blood. I didn't and couldn't see him at all, though Daren caught a glimpse of him as he was passed to the paediatricians.

The paediatric team worked hard to resuscitate him. He need an urgent blood transfusion, but again this was given only after some time had passed as, astonishingly, blood was not stored or even ready and waiting in the operating theatre, despite the obvious emergency. Daren actually offered to go and run to collect the blood himself as he had earlier that day seen the porters finishing their coffee in the dining room before they would answer another apparently urgent “pager”. They, like the midwives, seemed to be in no particular hurry.

Every minute seemed like an hour, both in the build up to the c-section and in the period after. Instead of our hopes and expectations being fulfilled we were in the middle of all of our worst nightmares. I had realised after a few minutes that they would not be passing our baby to us for that priceless first cuddle, though Daren was doing his best to reassure me.

Whilst I was laying there waiting to be sewn up, Daren and I knew it was important for this baby to have a name. My grandfather's name was Henry, and we had long decided that if we had a boy we would call him Henry. Cameron was Daren's grandfather's family name, and every descendant, boy or girl, in Daren's family, has this as a middle name. Therefore with a kiss on my forehead from Daren, we decided that our baby boy was to be Henry Cameron. It was important to us that the hospital staff knew that they were dealing with Henry Cameron, and not just a nameless, but very sick baby boy.

I was sewn up, but I still could not see Henry at all. Daren could not see very much either as Henry was surrounded by doctors and nurses who were working on him. We kept asking what was happening but nobody told us. The anaesthetist tried her best to reassure us, but it was obvious after a few minutes that Henry was very, very sick. I just waited to hear him cry but he did not. I thought at first maybe just his airways were blocked as I had seen so many times on the TV, but after a few minutes I knew it was much more serious than that.

I don't think I will ever get over the fear that gripped my heart as I lay on the operating table. My heart turned to stone. All we were told was that we had a baby boy, but we hadn't heard him cry, except for one tiny whimper, before I was sent through to the recovery room. Henry was not shown to us. I think one of the things a mother to be looks forward to, more than anything, is meeting her new baby and having him or her passed to her after the delivery, whether it be a natural birth or a c-section. That first precious moment is the stuff dreams are made of. Regrettably one of our lasting memories of Henry's birth are the words of the Registrar who delivered Henry, who stated;

“..well, I have done my job and delivered a beautiful baby boy, let's see if the paediatricians can do theirs..”

Those last few words were perhaps the most insensitive and inappropriate thing a doctor could have said in the circumstances. I knew then, as did Daren, that things were seriously wrong. This was not the fairytale we had been hoping for.

I was sent to a recovery room and I was shaking uncontrollably. I was told this was a symptom of the spinal. Before I was wheeled away, Daren and I agreed that he would stay with Henry and keep me informed.

Quite how, I don't know but Daren managed to get someone to phone my parents and they in turn alerted our immediate family.

My parents arrived. They went to see Henry and they told me how beautiful he was and how everything would be alright. They told me he looked perfect. He was perfect, except he was very poorly.

I was then sent to a room in the delivery suite. After hours and hours Daren managed to bring me a photograph of Henry. He looked so like his daddy. The first thing I noticed was he had a nose just like his Daddy. I treasure that photograph.

I was so upset that I could not see Henry and be with him. My first glimpse of my baby was a photograph. He had been torn away from me, his mummy. This was not how it was meant to be. I needed to make him better and let him know he was safe. It was only after many more hours that I was able to be wheeled, on a bed, into the Special Care Baby Unit. I could see Henry through a window. He looked so helpless and poorly and he was covered in tubes, but he was the most beautiful thing I had ever seen and he always will be.

As I was still on a bed, I was not able to touch him or talk to him. He needed me and I couldn't be with him. I had carried him for 9 months. I had talked to him, sung to him and played music to him. I had stroked him and then he was torn away from me so violently. Thank goodness his daddy could be with him. He knew his daddy from when he was in my tummy, as his daddy had sung to him every night and had spoken to him all the time. In those first few hours he responded to his touch and his voice. This is such precious time. Henry had his eyes open so much on that first day, I have seen this on the video camera. Later and for most of the time thereafter, but with a few notable exceptions, his eyes were closed.

As the anaesthetic wore off I was able to sit up, I was put into a wheelchair and I was pushed into the SCBU where I was finally able to touch our precious little boy. I was still in shock. This was about 7 hours after Henry had been born. To this day I am still traumatised, and always will be, by that lost time. I had expected to be getting to grips with breast feeding and getting to know my baby, not being torn away from him and not even having the chance to see him or hold him.

Poor Daren was going back and forth between Henry and me and all I could do was tell him to stay with Henry because I couldn't do that myself. He had to protect him and keep him safe. He had to talk to him and touch him and tell him I would be with him as soon as I could be. He had to know we loved him and he would be alright.

What I did not know was, that apart from being with Henry and trying to comfort him, Daren had been told by the paediatric consultant, that Henry was not likely to survive for more than 4 hours. He kept this to himself and told me later that he could not tell me this then, because of the state I was in and also because he felt that if he did not say it out loud, it would not happen.

Henry meanwhile fought on. Henry was such a brave little boy. Daren had arranged for my parents to come and sit with me. He then arranged for his parents to come to the hospital late on that Sunday evening because he wanted them to meet Henry and see him, especially if Henry did not make it through the night. Daren wanted to make sure our parents, Henry's grandparents, all met Henry. Their looks of joy tinged with sadness is something you never really want to see.

In the early morning, Henry was critically ill but fairly stable, he had exceeded the earlier gloomy prediction and there was talk of moving Henry to the Queen Charlotte's and Chelsea Hospital, as they had a clinical programme there for babies, like Henry, who have suffered severe trauma at birth. The babies are cooled right down to try and help them recover, unfortunately by the time they had finished stabilising Henry and had called the QCCH hospital it was too late to transfer Henry as part of that programme.

Remarkably, Henry did quite well to begin with on the Monday morning. I remember that I actually thought he was going to be okay. However without warning, he suddenly became very unwell again and a decision was made to transfer him to the QCCH hospital on the Monday evening. His blood pressure was dangerously low. They did not know why. The hospital did not have an echocardiogram scanner in the SCBU and therefore they could not scan his heart to try and understand why his blood pressure was so low. Aside from this they did not have an MRI scanner something he would need later, and so they felt Henry's best chance was to transfer him.

Transfer to QCCH

After much wrangling, to the point of threatening to discharge myself, Daren and I were permitted to travel to QCCH, but we had to travel by a separate ambulance as we were not allowed to travel with Henry. It took some time to make the arrangements to move Henry and, as I was also still an inpatient having undergone surgery, I had to make it clear that if they would not make the arrangements for me to go with Henry, I would discharge myself and Daren and I would drive there.

They got the message and they finally found a room for me at QCCH where I could still be treated as an inpatient and so they therefore agreed to transfer me. Looking back I simply cannot believe they could think that I would stay behind and have my baby travel to another hospital alone. How could I stay in the hospital without him? It took some time for the hospital staff to understand this and to accept that I would not be left behind, regardless of my condition. Our son needed us both and we needed to be with him to look after him.

We had been told that the time of Henry's transfer was a critical time, both in the sense of his life generally, but also critical in the sense that many babies simply do not survive the trauma of being moved in this way. It was his and our only hope so we built up the courage to say goodbye and tell Henry that we would see him in London soon.

Our transfer took just over half an hour as it was late at night. It was surreal, that apart from a few signs of life, most of the London seemed to be sleeping, totally oblivious to the events that were taking place. When we arrived at QCCH, we waited anxiously to hear whether Henry had survived the journey.

Henry was accompanied in the ambulance by a doctor and nurse from QCCH. It took some time for him to arrive and it seemed to take an age for them to extract him from the travel incubator and the mass of wires and tubes. We had to be patient but we were relieved to learn that he had arrived safely. We went up to see him and kiss him goodnight and we were told that we should sleep for a few hours. At this point I don't think Daren had slept properly since Henry had been born.

Henry was placed in the Neonatal Intensive Care Unit at QCCH. It was a much better equipped unit and we truly believed Henry would have the best chance and that he would get better here.

When we awoke we were told that Henry had had a very bad night. He had had a number of seizures and he was very sick. Daren and I were devastated, the only way they could control him was to place him in a coma to try and stop him having any more seizures. He was on a ventilator, he had probes into his head to monitor his brainwaves and he had a tube coming out of his nose. This was the first time I saw Daren break down – until now he had tried to be strong for both of us and for Henry, but the sight of Henry motionless was too much, even for Daren.

Henry's blood pressure was still dangerously low. The Consultant told us they expected that he must have a damaged heart, however when they gave him a scan using an echocardiogram machine, they discovered that despite all the trauma he had been through, his little heart was not damaged at all. But they could now see the reason why his blood pressure had remained so low. It was because Henry's heart was only half full of blood and therefore he did not have enough blood to pump around his body.

It was clear that Henry had been struggling since his birth (nearly 2 days before) with insufficient blood. When he had been transfused they simply underestimated the volume of blood he had lost, put simply his little heart was unable to pump sufficient blood around his body properly. He was unable to profuse his organs.

We believe this significantly added to Henry's difficulties. Had the hospital where he was born had an Echocardiogram machine, they would have been able to realise this much sooner and that Henry needed to be given more blood. To be fair there are obvious risks in pumping too much blood into a newborn baby, hence the hospital only gave him a “recommended” amount, however they badly underestimated how much blood he had actually lost.

It is echocardiogram type equipment that is so badly needed by our local hospital. It is simply not right that a baby as sick as Henry has to be moved because the hospital does not have the correct equipment to examine his heart. We are sure that valuable time was lost because of this. Though we will never know whether Henry would have survived had his heart been scanned much earlier, we will always wonder, if they had had such equipment, whether he would be here with us now.

Once they had discovered the serious lack of blood in his system the Consultant looking after Henry that day decided to undertake a bold step. He did this on the Tuesday morning. He took Henry off all his medication and transfused him with the correct amount of blood. As we watched over Henry on that Tuesday his blood pressure gradually went up to a good level. We were overjoyed. We thought we were over the worst but we were warned that this was just the start, Henry was still very ill.

Henry was taken off the ventilator for the first time on the Wednesday and we really thought he would get better. We were able to hold Henry for the first time. We were like nervous kittens holding him as we were desperate not to hurt him. Those times were truly amazing and I do believe it made a difference to Henry. He seemed really content to be held by us.

Our joy was short lived though as the Professor in charge of the NICU told us to prepare ourselves, as there would be a lot of trouble ahead. We thought he was just being pessimistic, but sadly he had the experience and knowledge to know what our future held.

We were told there was a 70% chance that Henry had brain damage, but Henry was so responsive to our voices and touch that we don't believe that he did sustain serious brain damage, but we will never know. We loved him so completely we would have done anything to make his life happy and content. Henry was due to undergo an MRI scan on the Friday to examine his brain, but the MRI machine which was adapted for use on babies in intensive care had broken down. He therefore never underwent an MRI scan.

Despite our hope and prayers Henry was not over the worst. We had thought he was on a long road to recovery but that was not to be. We were told that Henry had suffered very serious damage to his kidneys because of the lack of blood in his system. It is still not clear whether this was during the period after my waters broke, when he obviously lost a huge amount of blood before he was born, or whether this happened after he had been born and he was transfused with insufficient blood. It is probably a combination of both.

We were told from very early on that Henry was not passing urine because his kidneys were not working. We did not understand the significance of this at first. We thought his kidneys would get better by themselves. Sadly there is a window of 5 days when that could happen, and it had by now passed. We closely watched his urine output and it was such a small amount. We prayed for it to go up and we willed Henry to perform this miracle all the time. He really did all he could to get better but he just didn't have a chance.

We thought that his kidneys could be operated upon but we were told that was not possible. It is shocking to realise that in this day and age once your kidneys have been damaged, that there is nothing that can be done to repair them. You hear of all these wonderful life saving operations on babies hearts, livers, stomachs etc. but kidneys are just not operable in the same way.

We then believed Henry could undergo kidney dialysis. We arranged for an expert opinion to be given by a kidney specialist from Great Ormond Street Hospital. He came to see Henry on the Friday afternoon when Henry was just 5 days old. Unfortunately before he arrived Henry took a turn for the worse and it was thought (incorrectly) that his liver was bleeding. We were then told that Henry was too sick to be operated upon and he would not survive the surgery required to insert the tubes needed for dialysis.

We were both absolutely devastated as we had thought the meeting with the renal specialist would have resulted in a care plan for Henry involving dialysis and probably kidney transplants when he was older. We were told none of that was possible and that no doctor would operate on such a sick baby.

Short of a miracle there was nothing that could be done. The only time they would consider dialysis would be if Henry's liver function improved. The doctors then dropped another bombshell and they told us that they did not expect Henry to survive the next 24 hours. We were devastated, we prayed and prayed that Henry's liver would improve and watched him for the slightest sign. We did not give up hope as we had such a beautiful baby and he was fighting in such a brave way.

We spent every possible minute with Henry that we could. We did not leave the hospital building from the minute we arrived. Once I was discharged as an in patient, and I could leave the labour ward, we were lucky to be given a family room, courtesy of McDonalds Restaurants who sponsor rooms attached to the NICU for families like ours. That little room meant the World to us, as it meant that we could rest and sleep at the hospital close to our son.

Daren and I slept in shifts not wanting to leave Henry on his own even though he had a nurse caring for him 24 hours a day. The nurses were such caring and loving people and it was clear that they were all becoming attached to Henry.

Every minute with Henry was precious and the times we got to cuddle him were just wonderful. Even though he was on a ventilator the nurses were wonderful and did all they could to allow us to hold and cuddle Henry. We treasure every memory, every photograph and every minute of footage on the video camera that we have. I actually didn't want Daren to buy a video camera, as I was worried about money! How stupid those worries seem now. I thank God that Daren did buy the video camera, as we would not have that precious footage if he hadn't ignored me and gone ahead and bought it anyway.

Henry struggled on in such a brave way. We had him Christened on the Saturday after he was born and we were very lucky that all our immediate family were able to be there for his christening. His Godmother, Lucie (my sister) was there but sadly not his Godfathers John Beattie and Shaun Coughlin, though John was able to meet Henry briefly. Daren's sister Tanya flew in from Australia and was a great comfort to us both, and we are so glad she has stories to tell of Henry to our family down under.

Every day and against all the odds for 13 days, Henry fought on and tried to stay with us. In the end it was just too much for him and with multiple organ failure, his little body was giving up on him.

Despite his crippling illness, Henry summoned up the strength to open his eyes once more and he managed to take a little look at his mummy and daddy. Ten minutes later on Saturday 26 th November 2005 at 10.58 am, Henry died in our arms.

We realise now, that for all the time we had been praying for a miracle, we had already seen one, Henry was our miracle.

We do not know how Henry managed to open his eyes at that time as they had been closed for many days before as he had battled so bravely to get better, but somehow he did. We know now that he was telling us to take care and that he would be safe.

Henry touched the hearts of everyone who met him, many of the nurses cried when he died, as they had all loved him too.

Life will never be the same again for us. It seemed as though all our hopes and dreams went with Henry and we would have given anything in the World for him to survive. It wasn't to be. Our precious little boy has gone but he will be forever in our hearts and in our thoughts. We miss him so very much but we are so proud of him and his fight and for everything he has taught us. We are trying to be strong but it is so very hard.

The Aftermath and the future

After Henry's death we were told by our Consultant Obstetrician that; “..there was nothing that could have been done to prevent this tragic loss..” and that “..this was a very rare condition..”

Quite simply he was wrong. Is 1:2,500 babies rare? I don't think it is so rare, so as to justify the complete lack of diagnosis and treatment, especially where there are clear risk groups and obvious warning signs.

Painless unexplained bleeding is the major warning sign for vasa previa. I had this for 7 whole weeks between 11 and 18 weeks and again at 34 weeks. I also had most of the risk factors.

Astonishingly our consultant has confirmed that he was not aware that painless bleeding was a warning sign for vasa previa, nor was he aware of the risk factors. To compound the issue he has also stated that he would not know what to look for on an ultrasound scan in any event and he did not know anyone who has scanned for it. [On hearing the term vasa previa, it took Daren less than 5 minutes to learn all of these things via the internet site www.IVPF.org ].

Our consultant's complete failure on this front lead to my (Henry's) vasa previa going undiagnosed and as a result Henry had very little chance of survival.

No one alerted us to the condition of vasa previa or even suggested I might have it. We are not unintelligent, and we were well read and we had tried to read everything about bleeding in pregnancy but vasa previa was simply not mentioned.

It is absolutely shocking to Daren and I that the medical community in this country does nothing to try and diagnose this condition during pregnancy. Surprisingly, there are the odd and rare cases where it is diagnosed, but these are few and far between. There is no protocol for the diagnosis or treatment of this condition. It seems that it is a matter of the medical profession keeping their fingers crossed and hoping it does not happen. Alternatively there is an occasional and absolute fluke and someone manages to diagnose the condition.

The apparent justification for opting out on diagnosis in the UK nearly always comes down to cost. What then is the cost of a life?

In our son's memory, and to give all future babies the chance he never had, we will not rest until this condition is looked for routinely.