Niki wants you to see this photo of her cradling her dying baby – because a two-minute scan could have saved him
22:46 GMT, 19 November 2012
Right up until the day she gave birth, Niki Cunningham was told she could expect to have a perfectly healthy baby.
Though a routine scan at 12 weeks found her placenta was lying low in her womb — and might block the birth canal — by her 20-week check-up she was told it no longer posed a problem as her womb had enlarged.
When Niki, 29, a financial adviser from Budleigh Salterton, Devon, suffered bleeding at 32 and 34 weeks, she was sent home from hospital, the cause undiagnosed, and told not to worry.
'It is heartbreaking to discover all it would have taken was an extra two minutes to check and Harry would be here with me now,' said Niki Cunningham
So when she went into labour in June,
three weeks before her due date, Niki had no reason to expect anything
but a happy outcome.
half an hour after her waters broke, her baby’s heart rate dramatically
dipped and Niki suffered heavy blood loss, prompting doctors to perform
an emergency Caesarean.
It was already too late. The moment her son Harry was born, weighing 6lb, it was clear he was critically ill.
‘I never once heard Harry cry,’ says Niki.
‘I couldn’t move because I was paralysed by the epidural.
'All I could do was look at the concerned faces of the medical staff and beg them to tell me what they meant when they said he was “extremely poorly”.’
As the medical team fought to resuscitate Harry, a doctor explained that the baby had suffered major blood loss because the umbilical cord — the lifeline that carries blood, nutrients and oxygen from the mother’s placenta — had torn.
For the next 24 hours, Niki could only watch helplessly as her son underwent six transfusions to try to save his life.
The next day, Harry was handed to Niki and her husband Jamie to hold for the first — and last — time as his life ebbed away.
Niki refused to believe Harry's death was 'just one of those things'
Niki was discharged from the Royal Devon & Exeter Hospital the same day.
She refused to believe Harry’s death was ‘just one of those things’.
She researched on the internet and discovered her case was not as rare as she’d been led to believe.
Her pregnancy had been complicated by vasa praevia, where the blood vessels of the placenta grow abnormally and rupture, resulting in the infant starting to bleed to death.
Far from being unusual, this condition is conservatively estimated to affect more than one baby in the UK every day.
Worse still, Niki discovered vasa praevia can be diagnosed easily during pregnancy — leading obstetricians say almost every baby affected could be saved if delivered by a planned Caesarean before labour starts.
Furthermore, the technology to scan for the problem is available at almost no extra cost to the NHS.
In vasa praevia, either the umbilical cord does not grow into the middle of the placenta as it should, but attaches around the edge of the placenta, leaving the blood vessels exposed; or the placenta develops in two parts and the blood vessels grow to connect these parts, sometimes over the entrance of the birth canal.
In both cases, this leaves the blood vessels at risk of rupture as the baby is born.
In an estimated six out of ten births affected by vasa praevia, the baby dies of blood loss — those who survive may suffer conditions such as cerebral palsy as a result of being starved of blood and oxygen.
The latest guidelines by the Royal College of Obstetricians and Gynaecologists, published last year, say the condition could affect one in 2,000 pregnancies — but adds it may be ‘under-reported’.
A study by the Showa University School of Medicine in Japan puts the figure as high as one in every 350 pregnancies — which would mean it affects 2,800 babies a year in Britain.
One of the main reasons it’s believed to be underestimated is because many neonatal deaths are put down to unspecified haemorrhaging.
Furthermore, in a third of stillbirths the cause of death is never established, according to SANDS, the neonatal death charity.
Women who have had a previous Caesarean or any type of uterine surgery are more at risk because scarring can make it more difficult for the placenta to get the nourishment it needs, and it grows abnormally.
Most in danger of vasa praevia are women who have conceived by IVF — the rate of pregnancies affected could be one in 300.
This is probably because the embryo is artificially implanted lower down the womb than with a natural conception.
Niki has decided the picture of her son's final moments should be released. The moment Harry was born, weighing 6lb, it was clear he was critically ill
The technology to test for vasa praevia is available on all modern ultrasound machines, through Doppler colour scanning.
Sonographers switch it on when they want to look at the speed and direction of blood flow, often if a baby is small.
But leading experts say the same technique can and should be used to check routinely how the umbilical cord attaches to the placenta and to check for blood vessels over the entrance to the birth canal.
Indeed, Niki underwent Doppler scanning at 20 weeks, but it was not used to check how Harry was attached to the placenta because this is not part of NHS guidelines.
As Niki says: ‘It is staggering, and heartbreaking, to discover all it would have taken was an extra two minutes to check and Harry would be here with me now.’
In order to raise awareness of this, Niki has decided the picture of her son’s final moments should be published.
Yet in its last review four years ago, the National Screening Committee — the body that draws up scanning guidance for the NHS — decided there was not enough evidence to justify adding vasa praevia to the list of conditions mothers are scanned for, even for those in high-risk groups, and it would cause mothers too much anxiety to know more about it.
The Royal College of Obstetricians and Gynaecologists fears vasa praevia may be wrongly diagnosed in around 15 per cent of cases.
This would lead to unnecessary anxiety for mothers-to-be who would end up having Caesareans they don’t need.
However, one of the world’s leading experts in antenatal care, Professor Kypros Nicolaides, of King’s College, London, says that while vasa praevia is still thought of as a ‘rare condition’, ‘it is more common than Down’s syndrome — which accounts for one in 600 pregnancies.
'Down’s is no longer thought of as rare and is screened for by the NHS.
'There is a fear in the NHS that mothers will need to be hospitalised for the weeks leading up to birth. Vasa praevia is not generally a problem until labour.
'And this can be avoided with a Caesarean. Screening will prevent infant deaths and disabilities.’
Niki with son, William, two. She hopes to conceive again
As with Niki Cunningham, for Daren and Natalie Samat, from Great Missenden, Buckinghamshire, the diagnosis came too late.
Natalie underwent four years of fertility treatment before she became pregnant using IVF. The couple were not informed of the risks.
Even when Natalie, 41, a former lawyer, suffered frequent bleeds — often a symptom of vasa praevia as the vessels start to stretch — and underwent 18 ultrasound scans to look for the cause, vasa praevia was not suspected.
Their baby, Henry, died soon after his birth in 2005. The couple were told what had happened was rare.
Daren, a criminal barrister and spokesperson for the charity UK Vasa Praevia, says: ‘One of the objections to adding it to the national screening programme is that telling women about this condition would cause them unnecessary anxiety.
‘But I don’t know a mother who would not rather know about this, so they at least have the opportunity to manage that risk.’
A small number of NHS units are using their Doppler scanning machines to check for vasa praevia. Private antenatal clinics also offer checks for between 130 and 180.
West Middlesex University Hospital has been scanning all pregnant women for the condition for the past three years.
Elizabeth Daly-Jones, advanced ultrasound practitioner at the hospital, says: ‘If we take the time to screen, 97 per cent of these babies will survive.’
Niki Cunningham, who has a son, William, two, and hopes to conceive again, says: ‘I just can’t understand why at one of my scans, for example, they spent ages checking to see what sex Harry was.
'That time could have been spent diagnosing a condition that took his life.
‘As quickly as I said hello to my son, I had to say goodbye.
'I don’t want anyone else to go through this — for the sake of an extra two minutes on a scan, no one else would have to.’
Visit vasapraevia.co.uk and harrycunninghamtrust.co.uk.
THE PLACENTA: WHAT CAN GO WRONG
With more women having children later, and the rising use of IVF, placental screening has become even more vital, says Professor Kypros Nicolaides. The most common disorders of the placenta include:
This affects around six in 1,000 births. The placenta takes root lower down the uterus, often near to the birth canal. If it develops beneath the baby, it can stop the infant being delivered.
The placenta will also begin to separate, causing heavy blood loss to the mother. Bleeding is often a symptom. Mothers-to-be are checked for it at the 20-week scan.
Most common during the third trimester, this is where the placenta starts to come away from the womb wall. Risk factors include pre-eclampsia — or hypertension caused by pregnancy — falls, accidents, smoking, age and previous Caesareans.
Apart from monitoring women with pre-eclampsia, it usually can’t be predicted by scanning. Instead, it is usually identified by stomach pains, bleeding and frequent contractions.
Here, the placenta roots itself too deeply into the wall of the uterus. If it is delivered along with a baby, it pulls with it parts of the uterine wall, leading to the mother haemorrhaging.
Most at risk are women with low-lying placentas or who have scar tissue inside the womb from uterine surgery or a previous Caesarean.
Around nine in 1,000 NHS hospital births are affected, There is no screening for it — most cases are found when the placenta is not delivered within half an hour of birth.