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