Save 150+ Babies Per Year by Routine Screening for Vasa Praevia Risk Groups
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If there was a simple test for a little known, but life-threatening condition, which could save your healthy, full term baby during pregnancy would you want to take it?
Vasa Praevia is a condition which is killing our babies, but
- it can be easily detected,
- during an appointment that pregnant women already attend,
- using equipment already available.
- The test is reliable and accurate,
- and it will save most of the 555 perfectly healthy babies who are affected every year in the UK.
The Royal College of Obstetricians and Gynaecologists and the UK National Screening Committee currently deem this screening test unbeneficial.
Vasa Praevia affects around 1 in 2500 births, but being in a risk group increases that probability. For example, an IVF pregnancy has a 1 in 293 chance and 10% of all Vasa Praevia cases are in twin/multiples births. The RCOG admit that the condition is likely to be under-reported. They also state that around 20% of Vasa Praevia cases are from women not in any risk group at all.
In the RCOG Green-top Guideline (27b) they admit,
“…based on an 80% detection rate, the 2014 UK NSC external review found that the targeted screening of all twins and singleton pregnancies with at least one high-risk factor could reduce the perinatal loss rate by as many as 150 cases per year.”
That’s one baby every 2.5 days in the UK. This country has one of the worst perinatal loss rates in the world.
The RCOG say that,
“The performance of ultrasound in diagnosing vasa praevia at the time of the routine fetal anomaly scan has a high diagnostic accuracy with a low false-positive rate.”
Their reasoning for not introducing routine screening, quoted from the same guideline as above,
“Although targeted midpregnancy ultrasound screening of pregnancies at higher risk of vasa praevia may reduce perinatal loss, the balance of benefit versus harm remains undetermined and further research in this area is required."
What are the costs versus benefits that they are referring to? The benefits are clear – saving babies lives and decreasing the appalling perinatal death rate we live with in this country. The costs as they see it are maternal anxiety and a caesarean section delivery for those affected.
Vasa Praevia Raising Awareness, the UK charity, recently ran a poll in which over 1000 people responded. They asked, “At an 18-22 week anomaly ultrasound scan would you want to know if there was a suspicion of Vasa Praevia, even if at a later scan you were told the earlier suspicion was incorrect?” 99% of respondents answered that yes, they would want to know.
As a mother who had undiagnosed Vasa Praevia and lost my son as a result, let me tell you that I would give ANYTHING to have been told about this condition when I was pregnant. There is no logical comparison between knowing and not knowing.
Knowing about Vasa Praevia due to routine screening means
- around 15 weeks of anxiety,
- around 5 weeks of hospitalisation,
- and a planned caesarean section at 35 weeks of pregnancy,
- with a possible short stint for the baby in special care.
- Babies born at around 35 weeks generally do very well.
- When diagnosed in pregnancy and managed correctly Vasa Praevia has an excellent survival rate.
Not knowing about Vasa Praevia costs the NHS...
- in crash deliveries and the resources and knock on effects that has,
- blood transfusions,
- special care beds,
- ambulance transfers to specialist hospitals,
- lifesaving treatment for mums injured during rushed deliveries,
- ongoing treatment for the few who survive and are living with disabilities caused by bleeding out,
- bereavement care,
- counselling services,
- additional care in subsequent pregnancies and
- compensation for botched care due to lack of training and awareness of the condition.
On a personal level, not knowing for me and many other women means waking up to a catastrophic bleed, a struggle to find the heartbeat, either finding out that your baby has died inside you and inducing birth to a silent, stillborn baby. Or being rushed for a crash caesarean section, losing pints of blood. Often these babies are the culmination of years of fertility treatments and IVF. It’s not being able to hold your baby, visiting in special care and seeing his eyes open just one time. Being told that his organs are shutting down due being starved of blood too long while he bled out when your Vasa Praevia ruptured. It’s an ambulance ride to a bigger hospital the day after major abdominal surgery. It’s being told that his brain has probably suffered untold amounts of damage because of the seizures he’s been having. Undiagnosed Vasa Praevia is being taken aside by the doctors and told that there is nothing that they can do to save your son. Bringing in your family to meet him, knowing that no one will get to watch him grow up. Undiagnosed Vasa Praevia is the first time you hold your son being when they take him off life support to allow him to die in your arms. It’s spending time getting to know him up close but all the while his body temperature is dropping because he’s no longer alive. It’s arranging his funeral and buying a little white coffin, all while recovering from a major operation and massive anaemia. Sitting in the registry office surrounded by crying babies to register his birth and death. Years and years and years of grief, counselling, and PTSD. Being terrified to get pregnant again if you even CAN get pregnant again, and feeling incomprehensible amounts of anxiety for the whole 40 weeks. Undiagnosed Vasa Praevia is reliving every moment of his birth and death over and over and over and over. It’s bursting into tears when you hear his funeral song at a wedding and having a breakdown in the shower even though it was 5, 10, 15+ years ago. Undiagnosed Vasa Praevia is me, here, now. Crying my eyes out, sitting at my keyboard, pouring myself into a Facebook post and petition in the desperate hope that someone somewhere will LISTEN and put practices in place so that these babies don’t have to keep dying.
No, there is no question. Knowing is always better than not knowing.
So, would YOU want the test…?
- At a scan appointment you’re already attending,
- It’s not invasive or risky to your pregnancy,
- The technique is known to sonographers and already taught during training,
- Using ultrasound equipment that is already there and used frequently for other tests,
- Will save upwards of 150 babies Every. Single. Year.
It is literally life or death
Would you want the test? Have you been affected by Vasa Praevia? How does that impact you?
Consider signing my petition for the RCOG and NSC in the UK.
Complete your signature
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