We should expect consistency across UK hospitals during pregnancy scans. Cardiac protocol at the 20 week fetal anomaly scan should be standardised.  A simple measure is needed;

Hospitals should all capture the same views of the fetal heart. 

Congenital heart defect (CHD) affects around 1% of all births.  It is the most common congenital birth defect. This 1% equates to over 6,000 babies that are born with CHD in the UK each year - 16 every day. Around 1,000 babies leave UK hospitals each year with undetected CHD - 19 per week.  Around 300 infants die every year in the UK from CHD - 6 per week. CHD is one of the leading causes of infant mortality and accounts for up to 12 % of all deaths. 

This simple measure is needed because;

-UK hospitals do different things when scanning fetal hearts at the 20 week scan.  If the sonographer doesn't identify CHD some hospitals won’t record any views of the heart at all. However, some hospitals will still record images and some will actually record video clips.   

-Where you live is important when you go for a 20 week scan.  NICOR (National Institute for Cardiovascular Outcomes Research) suggest regional antenatal detection rates of CHD currently vary between 24% and 72%. Evidence suggests that where you live will determine what is identified and what is recorded. In 2024 NICOR reported; "There is considerable variability on antenatal detection rates for these patients within the UK".

-There is an NHS England FASP 20 week scan guidance document (Fetal Anomaly Screening Programme). Published in 2015, it currently advises hospitals; "there is no requirement to archive images of the fetal cardiac protocol views".  This guidance has resulted in hospitals doing things differently.

-NICOR is funded by NHS England and has a national cardiac audit programme. In it's 2023 national CHD audit NICOR advised; "to understand and improve rates of detection and reduce regional variation, several steps should be considered; storage of specific cardiac views to allow internal and external review to encourage a learning process and standardised pathways of feedback". 

-In 2023 The International Society of Ultrasound in Obstetrics and Gynecology (ISUOG) also published their fetal cardiac screening guidance. They advised countries; "use of standardized ultrasound protocols …can improve the performance of a screening program”. The ISUOG also advised; "we recommend archiving of still frames and videoclips, while also considering local/national standards. The examination should be recorded in a manner that will allow subsequent review to verify its diagnostic adequacy".

-We have identified further professional guidance which outlines the clinical value in retention of ultrasound views.  This guidance is from The College of Radiographers (CoR),  The Royal College of Radiologists (RCR), The Society of Radiographers (SoR) and the British Medical Ultrasound Society (BMUS).  All this further guidance post-dates the national FASP guidance and is also not compatible with the national FASP guidance.  

-This international, national and professional guidance is not compatible with FASP. We feel the NHS FASP guidance from ten years ago is wrong. Records should always be kept.  We feel a change in guidance and a blanket approach across the country is now needed. 

-We have submitted hundreds of freedom of information requests (FOIs).  We have established that around 57% of NHS trusts in England already retain images or video of the fetal heart during the 20 week scan - despite FASP advising they don't need to.  We have established that it is just a minority of around 43% of trusts that are now relying on the national FASP guidelines from 2015.  NHSE and the Integrated Care Boards did not know this "granular" detail until we clarified it through our FOIs - perhaps nobody had cared to find out. 

-We have identified evidence of a north - south divide. Our FOI responses demonstrate that trusts in the south of England and predominantly around London retain images and clips. It appears trusts in the north of England are largely not keeping records. 

-Average national statistics still show babies will only have a 50% chance of CHD being identified prenatally.  In 2025 NICOR stated this 50% statistic has now "plateaued" over the last seven years.  It is clear to us that detection rates have now flatlined and something needs to change.    

-Our hearts aren't ever assessed again if nothing is identified at the 20 week scan. If babies don't show signs of CHD after birth it will remain undetected. Around 1,000 families are being discharged from hospitals under these circumstances each year. It can remain undetected for years. Some of us are diagnosed in childhood, some are diagnosed much later in adulthood. You might have CHD - and still not know. Average diagnosis is still 50/50. 

-If views aren't retained this will prevent future development with AI. Large volumes of imagery data are needed for safe algorithms. Ultrasound devices with AI machine deep learning already exist - but they aren't being utilised in this space for routine screening. 

-The recording of fetal heart views at every 20 week scan would help improve learning and support training.  It would enable reflective practice. It would create a pathway of feedback for parents and professionals. It would ensure records of a baby’s fetal heart scan can always be accessed by their parents.  It would encourage diligence. It would support AI development. Most importantly, we feel it would help to increase antenatal detection rates in CHD.  We should have consistency in national pregnancy screening practices.  Fetal cardiac views should be retained across all NHS trusts.  

Thank you for reading.  Feel free to read Molly’s story below and how these issues have personally affected us;

Molly is our first and only child. She was born in July 2022 with a complete AVSD. This is a large hole in the centre of the heart affecting all four chambers and results in only one valve where there should be two. We live in a region that had one of the worst PPD CHD detection rates in 2021/22 at 37%. (Procedures with Prenatal Diagnosis) Our region is South Yorkshire and Bassetlaw. Molly was missed. Her complete AVSD wasn't found until she was 10 months old. During the 2020/23 period the PPD detection rate in our region for Molly’s heart condition stood at just 27.3% - significantly below the national average of 57.5%. 

Molly had 13 scans during pregnancy.  A total of 96 images were saved on every occasion throughout 12 of her 13 antenatal scans at our local hospital (Doncaster Royal Infirmary). The only scan where images weren't saved is where her heart was assessed at 22 weeks during a repeat anomaly scan. Images were captured and retained on every other occasion before and after the 22 week repeat fetal heart scan.  This 22 week scan was the only scan where her heart was assessed and deemed normal. Our local hospital advised that only the 22 week fetal heart images weren't saved and this was because of the FASP guidance.  We fear this may be a considered policy and deliberate practice from our trust, (alongside others) to conceal inadequate patient care during screening. 

Molly’s 22 week scan was pivotal.  We feel these cardiac views were proprietary to us. They should have been retained and should have formed part of mum's accessible medical records.  We have been profoundly affected based on the interpretation of this scan - for which there is simply no record. The long term implications of Molly’s late diagnosis are still not known.  As parents, we can review all the other 96 images of Molly throughout pregnancy. These images were seemingly simple to capture and viable to retain. We don't understand why the further cardiac images or views couldn't also be retained. There was a conscious and deliberate decision by our local hospital to exclude Molly's heart views only. NHS FASP endorse this position.  

We were asked to walk around the car park repeatedly at Molly's 20 and 22 week scan as her heart couldn't be seen clearly. Two sonographers ultimately determined her heart could be seen sufficiently but chose not to capture what they saw. 

Before her CHD diagnosis Molly had a very difficult 10 months with repeated issues. CHD in babies and toddlers can have a range of symptoms. The most common symptoms include any of the following; (individually or collectively) extreme tiredness, poor feeding, poor weight gain, excessive sweating, clamminess, rapid heartbeat, breathing problems, elevated breathing, repeated respiratory infections, puffy face/eyes, swollen hands or feet, chest pain or a blue tinge to the skin. 

Molly had contact with medical professionals on 26 occasions after birth until her heart murmur was detected.  Her complete AVSD was not identified during any of this contact.  We presented her to our GP and local hospital on 16 occasions where we specifically identified many of the above CHD symptoms.  Paramedics attended our address on 2 occasions due to some of the above symptoms we described to NHS 111.  Molly had contact with a number of doctors, registrars and paediatric consultants. None of these professionals were able to identify her heart murmur or condition.  We feel very fortunate that she ultimately survived. 

We'd purchased a smart sock shortly after birth and had always monitored Molly’s heart rate and blood oxygen levels each night. Her stats were also checked each time we attended hospital. Molly's levels always remained consistent and within acceptable boundaries.   This shows the importance of the 20 week scan and thorough physical examinations postnatally as pulse oximetry testing will not always identify CHD.  

Molly had such frequent contact with medical professionals as she also suffers from an undiagnosed neurological condition.  She suffers cyclical periods of severe vomiting and seizure following which she enters a state of reduced consciousness for up to 12 hours.  These episodes have recurred every 12 days.  We were admitted to hospital frequently for various tests, scans and monitoring due to these neurological episodes.  Frustratingly, Molly’s complete AVSD continued to go undetected throughout all of this time.     

We were blindsided when Molly's complete AVSD was diagnosed at 10 months old.  We had been so focused on her neurological issues.  When found it was described as a “harsh murmur grade 3". Complete AVSD is a CHD where surgery is advised in the first year of life.  Molly's heart had become enlarged and her lungs had deteriorated due to the increased blood pressure they were exposed to.  

Within weeks Molly underwent open heart surgery which took place shortly before her first birthday.  We travelled out of our region and attended one of the national cardiac centres (LGI). We were fortunate and are very grateful that Molly was able to receive sugery immediately. She spent 7 hours in surgery.  It's hard to describe how grateful we are to the surgeon (GP) and all the staff who helped us at this cardiac centre. They saved Molly's life. 

We’d hoped to review Molly’s 22 week cardiac views from our local hospital. We'd hoped for some closure that it was not possible to detect antenatally. We’d hoped for reassurance that some of the later difficulties we’d encountered were unavoidable.  This closure and reassurance hasn’t been possible for us as the hospital advised us that no views were recorded. 

It seems the more time that passed, and the more professionals we encountered - the more assumptions were made about the function of Molly's heart.  These are the dangers in cases such as ours. Consistent national practice and record retention must surely improve detection rates and iron out the regional variation seen. Improved detection rates could prevent significant numbers of families going through what we have.  We are conscious and upset that there are many more families that are not as fortunate as ourselves when things can clearly be improved.  

We had a very challenging 10 months until diagnosis. We'd like to drive some positive change and raise awareness of what is actually happening in different hospitals. Ultimately we're seeking to improve regional detection rates through standardised protocols.  Views should be retained. 

Please join us.  Please sign and share. 

Molly’s parents 

Email;

mollys_missing_views@proton.me