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 we had been scanned for this condition.

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.

We were truly blessed to have success on our first attempt at IVF. 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.

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.

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

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.

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.

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. I was told after each scan that all was well.

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.

The birth

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.

Sunday 13th November 2005, started as the day before had ended. As I had not progressed in labour, I was induced . As advised I continued to be active and to try and bring on my labour.

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. 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.

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. 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 . He then made the decision to perform an emergency c-section. 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.

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.

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.

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 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.

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 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 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.

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.

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.

Transfer to QCCH

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 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.

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 took Henry off all his medication and transfused him with the correct amount of blood. 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.

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.

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.

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. 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.

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 that; “..there was nothing that could have been done to prevent this tragic loss..” and that “..this was a very rare condition..”

Quite simply I believe that is 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.

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.

(This is an edited version of the account that appears on the website of the UK Vasa Praevia Awareness Group - www.vasapraevia.co.uk)

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