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)
