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AT LEAST 350 newborn babies are dying in British hospitals every year because financial pressures are deterring doctors from checking for a life-threatening abnormality during pregnancy.
Senior consultants have privately admitted they do not carry out the necessary scan for the condition — vasa praevia — to avoid the costs of caring for affected mothers.
Other developed countries including America, Germany and Holland routinely check for the condition, which has a near-100% survival rate if diagnosed during pregnancy. In Britain, the mortality rate for otherwise healthy babies whose mothers suffer from it is more than 90%.
The scandal has been exposed by a husband-and–wife team of lawyers, one an expert in clinical negligence, whose son died shortly after birth in 2005 as a result of vasa praevia. Daren and Natalie Samat, of Amersham in Buckinghamshire, have formed an action group to campaign for all mothers to be scanned.
Vasa praevia occurs when blood vessels from the placenta or umbilical cord block a baby’s exit from the womb. When this occurs and the mother’s waters break, the blood vessels rupture and the baby loses large amounts of blood, typically causing its death.
However, experts say the condition can be relatively easily diagnosed by ultrasound as part of the standard 20-week scan. Expectant mothers with vasa praevia can then be admitted to hospital for several weeks and their babies delivered by caesarean shortly before they are due naturally.
National Health Service trusts are understood to be resisting introducing checks as those diagnosed with vasa praevia must be funded to spend between four and 15 weeks under close monitoring in hospital before having a caesarean.
According to official figures, at least one in every 2,500 babies dies as a result of vasa praevia — equivalent to between 350 and 400 every year.
However, experts believe the true figure could be at least twice as high, because many deaths are not recorded as being by vasa praevia. The death certificate of Henry, the Samats’ son, records that he died of “multiple organ failure”.
One leading specialist based in America who used to work in Britain believes the incidence of vasa praevia may be between one in 300 and one in 500, according to his clinical data.
Yinka Oyelese, of the Robert Wood Johnson University hospital, New Jersey, said: “There is no other condition I know of where prenatal diagnosis makes such a difference. Prenatal diagnosis is crucial.”
The Samats lost their son in November 2005 after four years of trying for a baby. Natalie, a leading London-based clinical negligence lawyer, had to have an emergency caesarean after heavy bleeding while her waters broke.
However, Henry had lost large amounts of blood, which caused severe kidney failure. He died in a specialist intensive care unit when he was 13 days old.
After setting up the UK Vasa Praevia Awareness Group, Daren, a criminal barrister, has travelled to medical conferences throughout Europe to raise awareness and research the condition. The couple, who six weeks ago had a healthy daughter, Francesca, have been told in private meetings with senior consultants that the condition is not diagnosed in most NHS hospitals for cost reasons.
“We had never heard of vasa praevia or its horrendous consequences until after the birth. Then, from basic research we discover that it is something that can be relatively easily diagnosed and dealt with,” said Daren.
“We have been told point blank that vasa praevia is not diagnosed because of the costs associated with treatment. We understand the cost pressures on the NHS, but we were never even diagnosed and given the choice of paying for assistance elsewhere.
“We have decided to campaign because we cannot stomach the thought of any other parents going through what we have in the past year.”
Laura and Marcello Mongiovi, from Wolverhampton, also lost their son, Alfonso, 22 minutes after his birth last June.
Laura, a building society worker, said: “It was horrendous. First there was a tiny spot of blood and then there was a flood. They rushed me into theatre and gave me a general anaesthetic. When I came round, a man, I think he was the anaesthetist, told me very gently, ‘We couldn’t save your son’s life, I am so very sorry.’
“The first I knew of vasa praevia was two days later. Now it’s with us every day, every night.”
A forthcoming study on vasa praevia is expected to show that fewer than 10% of NHS hospitals have guidelines requiring expectant mothers to be checked.
Stuart Campbell, a consultant at the Create Health Clinic, London, who pioneered 4D ultrasound scans that show foetuses yawning, smiling and “walking” in the womb in real time, said more should be done to screen for vasa praevia. “Everyone is seen at 20 weeks and I think it is crucial that the 10% who showa lowlying placenta are referred to a foetal medicine unit for specialist analysis,” he said.
Lisa Paine, a children’s books editor from Tunbridge Wells, Kent, is one of the handful of Britons who can testify to the value of such specialist checks.
Her daughter Emilia was born in May 2005. “I was so lucky to have a doctor with a high degree of suspicion. I was diagnosed and my pregnancy was managed very carefully. I had a caesarean at 38Å weeks after 14 weeks in hospital,” said Paine.
“I look at my daughter and she’s beautiful and perfect. All it took was for someone to look a little bit harder, it is so easily treatable.”
The Department of Health said yesterday: “Routine screening for vasa praevia is not currently advocated as it is a technically difficult condition to detect, even for a highly skilled ultra-sonographer with the appropriate specialist equipment.”
If you would like to tell us about your experiences of vasa praevia, please e-mail health@sunday-times.co.uk
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The first time that I had ever heard about Vasa Pravia was when I was admitted to hospital during the pregnancy of my fourth child for bleeding, I was 32yrs old and what I would deem to be quite an informed person on pregnancy and the complications that may from time to time surround it...I was wrong! I was just so lucky that the lady who performed my ultrasound looked at it over and over until she concluded that I infact had Vasa Pravia. It was so rare that even in the city of Perth, Australia, the doctors had to get information on this deadly condition from the internet to show me just what myself and my most precious unborn child was up against. It was her persistance with rechecking my ulstasound that I credit to saving my beautiful baby boy, Jett's, life. I was not allowed to leave hospital, I felt like a chook sitting on an egg. They were some of the toughest days/weeks of my life but now that I have come to appreciate the gravity of the situation i couldn't be more grateful.
jodie, Perth, Australia
I lost my first child, James too to VP in October 2002 the day after he was born after carrying him for 41 weeks, following a hemmorage and emergency c-section. An enquiry found that I was not given sub-standard care, as it is not standard clinical practice to look for problems with the cord or the placenta (apart from the position of the placenta). I was also induced with prostin gel despite that being contra-indicated with women who have unexplained vaginal bleeding. My heart still breaks when I think about how the system failed me and my little man.
Jo Bradley (aka Gadd) , Sutton Coldfield, West Mids, UK
We lost our beautiful grandson Alfonso to this horrendous condition.The grief and anger we feel that this could have been prevented will never leave us.His loss should not be in vain as our daughter and her husband are doing all they can to raise awareness,but even today we have heard of a couple who we know very well being turned down for a vasa praevia scan because of the ignorance of the sonographer who didn't think there was any risk!!How does she know unless the scan is done?This happened at a local West Midlands hospital today.The significance of identifying vasa praevia prenatally is vitally important because there may be no underlying conditions to cause alarm.Our daughter had no indication of any problems until her waters broke,by then of course it was tragically too late.Such a pointless waste of a precious life.
Our thoughts are with all the families who have lost their cherished children and grandchildren in this appalling way.
Liz and John Sheppard, Wolverhampton, England
It is astonishing that cost effectiveness could be even considered in a situation as sensitive as this . I am a GP and it is horrifying to know that not even an attemp is made to diagnose this condition, let alone treat it.
raj, ,
Super that vasa praevia is covered in this article. Daren and Natalie, and all the other parents who told their stories: it's very courageous to tell your story to such big audience.
There's one minor error in the article about screening for vasa praevia in the Netherlands. Unfortunately in Holland they don't routinely check for this condition (yet). Since januari 2007 all pregnant women can have a routine 20 weeks ultrasound which is paid for by insurance. In this US they routinely check for the placental location and optionally they check the umbilical cord insertion. There is no follow up though if one of the risk factors for vasa praevia is found. The placental structure is also not routinely checked for so a bilobed placenta is not likely to be found. We do hope that this story will help to make those important checks for vasa praevia happen in the near future! Thanks!
Kind regards,
Marlou van Dijck, Ittervoort, Netherlands
I am truly hopeful that with the dedication of these brave parents and everyone seeking to raise the awareness of this condition, we will one day live in a world where this is routinely checked for, diagnosed and children's lives are not un-necessarily lost.
Melanie Goodhead, Wolverhampton, England
Thank You for covering this very important story. Everyone who plans to have children should be aware of this heartbreaking condition.
Jamie McMillan, Sanford, NC/USA
We would like to thank the Sunday Times for covering this story. Anyone affected by vasa praevia, personally or professionally, please visit the UKVP raising awareness... website on: www.vasapraevia.co.uk . Thank you once again.
Daren Samat, Amersham, England
I thank you, too! We lost our son Joseph in 1997 to vasa previa. This condition is heartbreaking, and it is wrong that babies are loosing their life to it. We test for so many things. Why not something that matters?
Kimi, North Liberty, IA
We recently had an IVF child, Sophia, without any problems. I was fortunate enough to meet Daren Samat at about the half way point of my wife's pregnancy and he alerted me to the importance of checking for VP. At the 22 week scan at Kings College Hospital in London I asked the consultant sonographer about the condition and testing for it. She explained the condition in simple terms and then showed me, using two-dimensional (i.e ordinary) ultrasound equipment that my wife's placenta and our baby's umbilicus were neither vasa praevia nor placenta praevia. I wonder, therefore, whether the quote from the Department of Health, about the difficulties in testing for the condition, can possibly be correct. I rather suspect that we are, again, being misled, if not deceived, by an administration that has lost all respect. To allow otherwise perfectly healthy babies to die as part of a cost-cutting exercise is unforgivable.
Charles Evans, London, UK
Thank you, thank you, thank you for this VERY important article! Vasa previa happens at least twice as often as spina bifida and vp babies (who are HEALTHY babies) almost all die without that precious antenatal diagnosis and proper management. We aren't talking rocket science here, just awareness, hospitalization in the 3rd trimester, and an early C-section. I sure wish I'd had that gift! My son died from vasa previa in 1996, before much of anything was known about the condition. It is criminal that vasa previa babies are still dying from this heartbreaking condition. There's simply no excuse for it!
Cindy Paris, St. Louis, MO, USA
My daughter Kayla was born 12 years ago due to undiagnosed VCI/VP.Her birth was very traumatic due to her losing 85% of her blood supply and lack of oxygen.She had to have 7 blood transfusions along with other life saving techniques.It has been 12 years of pure heartache for us and for her.She cannot walk,talk or do anything that a normal 12 year old can do.Her whole life has been doctors,hospitals,surgeries,procedures,etc.If they only would have listened to me and some warning signs I was experiencing Kayla would be totally normal now.I think that every pregnant woman in the whole world should be tested for this condition.They test for everything else why not this.After Kayla was born my OB totally ignored us and what hazd happened to Kayla.He claimed to never have heard of this before.Hopefully now he test's all his patients.We love Kayla desperately and would not trade her for anything.Hopefully every single doctor will read this article that the dear Samats wrote and start testing.
lacy rozo, royse city, texas
My son, Nicolas, would be celebrating his first birthday on March 1st had the doctors taken 60 seconds to check for vasa previa during our 20 week scan. Instead, I carried him, a perfectly healthy and beautiful baby boy, for 41 weeks only to lose him during labor. Knowing that a simple test and a little extra caution could have saved his life is a burden I live with every day. It is so hard to accept his death knowing it did not have to happen. I wonder what he would have done with his life, how many people he would have touched, had he lived. I am from the United States, and sadly testing for vasa previa does not seem to be routine here either. It is a terrible thing to lose your child to something that is so easily diagnosed and managed.
Dena Massey, Corona, California/USA
The U.S. system isn't so great at diagnosing this condition - YET. Medical students are lucky if they see a paragraph of information on Vasa Previa during their years of education and training.
If my son's VP had been diagnosed prenatally, we would have been spared a horrific birth experience and five years of constant worry about long-term effects. We were lucky in that our baby survived, but he still has many challenges to overcome.
Doctors consider this a rare condition. It's not so rare if it happens to you.
Julie, Detroit, MI USA
I am sad to say that the statement in this article that says America routinley scans for this condition is not entirely true. It has definately gotten better as more doctors & other medical professionals become aware... (thanks to Cindy Paris, the Samats and many other wonderful people associated with the IVPF)... but it is not yet a standard test here. We almost lost our son to undiagnosed Vasa Previa two years ago and many others continue to lose their children today.
Dawn Salerno, Cape Coral, FL
This is clearly a sad story, but one that does not surprise me. As a specialist registrar (consultant in training) working in the NHS, I see examples of substandard care being delivered on a daily basis in order to reduce costs. Patients leave consultations oblivious to this fact, until things go wrong. The simple fact is that the NHS in it's current form is unsustainable. Britain as a nation spends one of the lowest proportions of it's gross domestic product on healthcare of all 'first world' nations even with all the money thrown at the NHS by the currrent government. Despite this, it's citizens expect a first rate service. Things need to change. I'm not advocating a 'money grabbing' system like the one that operates in the USA, but the notion that 'healthcare should be free for all' engrained in the British psyche is an 'Alice in Wonderland' idea. I can't walk in to Tescos and walk out again with a basket full of shopping without paying for it, so why should the same be true of healthcare. People in the UK should take heed of the old maxim 'you get what you pay for'.
John Dixon, Nottingham, UK
My little girl is one of the lucky few that survived undiagnosed vasa previa. I think it's disgusting and inhumane not to scan for it due to costs.
Linda, wellingborough, UK