Letby: Why Are We Still So Close to Nowhere? 'Lay'ing It Down For The 'Experts'.

Links to research material can be found here

By Sarah Hawkins, Researcher, Campaigner and Freelance Investigative Journalist.

Professor Dr Richard Gill, emeritus professor of mathematical statistics at the University of Leiden,

This article focuses on the twins and multiples in the indictment to see whether or not we could understand a little bit more about their presentation when they were born. Our heartfelt sympathy extends to the parents of all of the babies. This paper serves to help everyone to better understand what may have led to their deaths or collapses that does not include malfeasance by Lucy Letby or any other nurse charged with their care.

A Read Along Can Be Found Here.

Sarah Hawkins’ years of work and research into the area of maternity, specialising in twins and multiples has introduced her to the sometimes unsavoury area of medical studies, particularly those involving twins. The antenatal care of vulnerable infants has led her to compile a substantial body of evidence. Sarah campaigns for improvements in this area and also against the use of twins for research purposes unless it directly benefits them. Sarah has supported hundreds of families during the perinatal window and advocated for them after they have suffered a loss to understand what happened and to address any failings in clinical care in their pregnancy and neonatal care. This work necessitates a direct address to the “experts” and institutions involved. From a “lay” expert’s standpoint, committed to uncovering facts, a persistent question emerges: despite established ethical guidelines and layers of institutional oversight, why does achieving genuine transparency and clear accountability feel so profoundly difficult? This investigation is not undertaken lightly; for some, including Lucy Letby, a woman whose very freedom currently hangs in the balance, the unearthing of untarnished truth from within these intricate networks could prove absolutely critical. In December 2024 having cause to reflect upon research which included work undertaken for abstracts accepted for poster presentation at two world congresses’, she saw things in a new light and saw a possible link to the Letby case she could not ignore. 

Richard Gill, lives in the Netherlands; born in the UK, living and working for more than 50 years in the Netherlands and has both Dutch and British nationalities. In recent years he has worked intensively in forensic science and before that mainly in medical statistics. He is a member of the Royal Dutch Academy of Sciences and has served as president of the Dutch Statistical Society. He has been involved numerous times in scientific integrity investigations into the work of influential academics who use questionable research practices in order to fake scientific findings by manipulation (and sometimes faking) of statistical data, as well as advising courts, police, prosecution and defence teams in many high profile criminal cases.

In terms of the twins and multiples in the indictment we found some statistical anomalies that deserve exploring further. This paper serves as an introduction to our findings and ongoing work. We will explain why this anomaly in numbers could not possibly be because of Lucy Letby, and there can only be an alternative cause. Our findings will even be new to the reader who already has had a keen interest in the case. 

Edit

"The Lucy Letby case started with concern about a distinct spike in deaths at the Countess of Chester Hospital neononatal unit from mid 2015 to mid 2016. It is now pretty clear that all deaths and collapses were natural. The spike has several causes and one of them is clearly the increased acuity of cases being cared for in the CoCH NICU. We know why the spike stopped: the unit was downgraded to Level 1. So, the question becomes: why did the acuity of babies admitted at the Countess suddenly increase so steeply?

Several things were changing at the end of 2014 and moving into 2015, concerning referrals and transfers in the landscape of hospitals around Countess of Chester. We think that some of the changes involved Liverpool Women’s hospital with its high prestige centre for research into pregancies with twins and multiples."

First, we want to explore some disciplines to give context going forward.

Twin Studies Versus Twin Research.

It’s important to make a couple of distinctions to understand these terms.

Twin studies: refer to research that uses twins to understand concepts like nature versus nurture and genetic predisposition. These studies use the “Twin Method,” a concept pioneered by the 19th-century scientist Francis Galton. 

While these studies have evolved in sophistication, they are based on the now-known scientific premise that identical twins share nearly 100% of their DNA. By observing identical twins or multiples who have experienced different environments or lifestyles, researchers can compare them to gain a better understanding of the various factors that affect how a person ages, thinks, and behaves, as well as how their character develops psycho-sociologically.

Twin research: is a term used by researchers and clinicians that refers to research on twin-related complications for the purpose of benefiting twins.

Epidemiology, Epigenetics and Maternity.

Within maternity, there is a medical discipline called Fetal Medicine, which explores genetics to discover life-limiting abnormalities and conditions incompatible with life. This area of medicine plays a crucial role in high-risk pregnancies, such as those involving twins, multiples, assisted fertility, and IVF.

The discovery of IVF created an urgent need to safeguard the health of both healthy pregnancies and fetuses. When an embryo is created outside the body, its epigenome, the very system that tells genes what to do, undergoes a massive reprogramming.

This process carries a real risk of certain imprinting disorders in IVF. The greater chance of a multiple pregnancy has also made this a powerful magnet for epigeneticists. They view it as a high-stakes lab for studying how the environment impacts gene function, making their expertise essential for improving outcomes. It just so happens that epigenetics is also where twin studies are of great interest, as epigeneticists’ interest extends beyond pregnancy and into life.

This intersection is where epidemiology becomes a crucial partner. While epidemiology identifies the distribution and determinants of health outcomes within populations (for example, a higher incidence of certain conditions in IVF pregnancies), epigenetics provides the molecular-level explanation for how these environmental factors and lifestyle choices directly influence gene function. This collaboration, known as epigenetic epidemiology, helps to bridge the gap between population-level observations and the underlying biological mechanisms.

The Lucy Letby Case. 

Despite much information being unobtainable, we have been able to discern that there are at least 11 twins and multiples among the 17 babies in the indictment; which is almost two-thirds! Of these 11, 4 babies died neonatally. There were an additional 4 co-twins/co-multiples (have or had a twin sibling) related to the babies in the indictment, with 2 reported to have died in utero after 24 weeks, and this makes the perinatal mortality of the multiples to be 6.

We will consider the cohort to include the babies named in the indictment, along with their related co-twin or multiple-birth siblings, not included. 17 on the indictment plus the 4 relatives = 21. Of these, 15 (71.4%) were twins or multiples, while 6 (28.6%) were singletons.

The overall perinatal mortality within this group is 6 deaths, representing 22.2% of the total cohort. Among the twins and multiples, the perinatal mortality rate is higher, while among the singletons, 2 of the 6 infants died, representing a mortality rate of 9.5% (2 out of 21).

When we compare twins and multiples to singletons, we find there were five times as many deaths among them. Perinatal mortality accounts for three-fifths (⅗) of the total deaths in the twins and multiples group, making the deaths three times higher than that of the singletons.

Fortunately for us, there was a national audit published for the years 2015 and 2016 called the NHS Maternity Care for Women with Multiple Births and Their Babies: A study on feasibility of assessing care using data from births between  1 April 2015 and 31 March 2017 in England, Wales and Scotland, by the National Perinatal Epidemiology Unit (NPEU). Though this is called a “national audit” it only involved 30 units selected by the researchers who published it. The Countess of Chester (CoCH) did not participate in this audit (https://maternityaudit.org.uk/FilesUploaded/NMPA%20Multiple%20Births%20Report%202020.pdf). 

It looked at maternity care for women with twin pregnancies and their babies and found that the twin neonatal deaths was 5.34 in 1000 live births, which is 0.5%. Twin Stillbirths were 6.16 per 1000 which is 0.6% pregnancies. Since the overall perinatal mortality for twins and multiples is 11.5 in 1000 or 1.1% and the reported stats for singletons were 5.01 in 1000 or 0.5%, this makes twins and multiples generally two times more likely to end in a perinatal mortality. Interestingly, this report, which was conducted through MBRRACE-UK (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK), which was was supported by The Twins Trust when it was formerly known as The Twins and Multiple Births Association (TAMBA). It found there was a fall in stillbirths and neonatal deaths compared to previous years. The Twins Trust website has a page with a poster promoting their findings, but when one clicks on the link to the hyperlinked documents, it is only accessible to members or healthcare professionals.

https://twinstrust.org/who-we-are/what-we-do/improving-maternity-care/maternity-engagement.html

For the period of the Letby case, (between baby A and baby Q) there were a total of 3296 births at the Countess of Chester, a general hospital with very little inhouse expertise in perinatology. It couldn’t even deliver the most basic care to mothers and babies due to poor infrastructure and staffing. One should expect such a hospital would refer any complicated twin and multiple pregnancy for monitoring at a specialist hospital, especially if there is evidence or suspicion of an issue. Most stillbirths and neonatal deaths in twins and multiples, but for the incredibly few, occur in those pregnancies with known high-risk factors that can be detected prior to birth with good monitoring.

Had the Countess of Chester had the usual number of uncomplicated and low-risk pregnancies (referring those with any signs of trouble,) their number of perinatal losses in twins and multiples would have been at the conservative end of the national statistics, not over. 

We do not know the number of stillbirths or neonatal deaths of twins in total for that period at the Countess of Chester. Based on the audit statistics and the likelihood of pregnancies resulting in twins, one would expect at most two (2) perinatal deaths of twins and multiples not four (https://courses.fetalmedicine.com/fmf/show/179?locale=en). Though even two would be questionable, as you would expect a referral to a better hospital and clinicians.

A Little Understandable Science. 

When we speak about twins, we must separate the difference between the types of twins and different types of twin pregnancies. Identical twins are from one fertilized egg (zygote) and depending on when that egg splits depends on the type of pregnancy. One egg can split to create 2 identical twins, and if one of those eggs splits again, it can become a triplet pregnancy. 

It can be complicated to a lay person, but there are identical twins or fraternal twins. In the case of identical or monozygotic (MZ) twins, (mono meaning one and Zygote meaning egg,) if the egg splits early, this will result in a dichorionic diamniotic (DCDA)twin pregnancy (Di meaning two and chorion being the fetal tissue that includes the placenta.) These twins have their own chorion and placenta. If the egg splits later, they will be monochorionic, (mono meaning one and chorionic meaning the chorion and placenta) and will share one placenta. These twins from one egg (zygote) will still be identical and share almost all of their DNA.

If there are two eggs (Zygote), this is called Dizygotic (DZ) twins, (di meaning two and zygotic meaning egg.) They will always be dichorionic and have their own placenta. Though sometimes their placenta may fuse but they will not share any vascular connections. These twins will be as alike as any two regular siblings and can be of different sexes. 

Every baby in utero has an amnion, and in rare case's monochorionic twins share an amnion. When we write the types of twins and triplets in the case we have three different types. But they were all diamniotic (di meaning two, and amniotic, meaning amnion.)

With many errors in the plethora of reports, some from “experts,” we do not have information on all of the twin pregnancies, so we have gone through them, discerning from what we know and what is more likely. 

Of The Twins, As Recorded There Were: 

Two babies known as baby A&B from one very high-risk dichorionic diamniotic (DCDA) pregnancy. Baby A sadly died. The mother was not booked at the Countess of Chester and due to her diagnosis of antiphospholipid syndrome (APS) she was booked under the care of two London hospitals. She also had gestational hypertension and cholestasis.

One baby, known as Baby Q, from a DCDA pregnancy whose co-twin was ectopic and surgically removed. The mother had a post-surgical bleed at 26 weeks. There has been no record of where the mother had the surgery or was booked, but she gave birth 5 weeks after this bleed, at 31 weeks and 3 days (31.3) due to a ruptured placenta at the Countess of Chester. Baby Q survived.

Two babies known as E&F from one monochorionic diamniotic (MCDA) pregnancy. These babies developed Twin to Twin Transfusion syndrome (TTTS), which is one of two conditions known to affect these types of twins, where there is an unequal sharing of blood due to connections within the placenta. Following a fairly “Normal” MCDA pregnancy up to 27 weeks the mother was admitted to Liverpool Women’s with TTTS for monitoring to get to 30 weeks to be born. At 29.5 weeks, the mother was sent to from Liverpool Women’s Hospital, a tertiary specialist unit, to the Countess of Chester for urgent delivery (https://thirlwall.public-inquiry.uk/wp-content/uploads/2024/09/Thirlwall-Inquiry-18-September-2024.pdf). Baby E died and F survived.

One baby, known as Baby J is known to be from an MCDA pregnancy. She lost her co-twin in utero due to TTTS. She had the surgery in a London hospital following a long admission to Liverpool Womens' and then gave birth at the Countess of Chester at 32.2 weeks due to rupture of membranes (her mother’s waters broke). J survived.

When an MCDA twin loses their co-twin in utero, there is a 15% risk that one or both babies may die, and at least 1 in 4 survivors (25% or more) may suffer from serious brain damage. There’s also a very high chance (60–70%) of being born prematurely. If one twin dies before 24 weeks of pregnancy, the other is more likely to die too, but if it survives, it may have less risk of brain damage. If one twin dies after 24 weeks, the surviving twin is more likely to live, but also more likely to suffer brain damage (https://fetalmedicine.org/education/fetal-abnormalities/multiple-pregnancies/mc-twins-death-of-one-fetus).

There is one twin known as baby N in the indictment, that it is unknown whether their co-twin passed away, is of an unknown pregnancy presentation, i.e we cannot tell if they were MCDA or DCDA. However, his mother was a haemophilia carrier. They were born at 34.4 weeks when born and had selective intrauterine growth restriction (s)IUGR which is sometimes called Selective fetal growth restriction (SFGR). This can happen in either type of twin pregnancy, but for different reasons. This baby was incredibly small for its gestational age. He survived.

There are two babies known as L&M from one twin pregnancy. They were born on the 8th of April 2016. At the end of March, at around 30 weeks pregnant, their mother felt poorly and was admitted for 15 – 17 days. Their testimony was that there was a growth issue with baby L. The weights do not reflect a significant difference; it is likely that the measurement that was low for gestational age was blood flow to the brain, which is called cerebroplacental ratio low. It is most likely that they were monochorionic diamniotic (MCDA) twins and had either TTTS or Twin Anaemia Polycythemia Sequence (TAPS). The reason we believe this is because there was a size discordance which while small, the smaller one developed something called oligohydramnios which is where one baby has very little amniotic fluid surrounding them in utero and the larger one was born “plethoric” or red and “full of blood” with raised hemoglobin (HB), https://karger.com/fdt/article-abstract/27/4/181/135700/Twin-Anemia-Polycythemia-Sequence-Diagnostic.  Both these babies survived and the lasting issues being that the smaller one has speech and language difficulties which is common.

Then there is the triplet pregnancy of which O&P are two of (with the third often referred to as baby R,) a 1 in more than 100,000 pregnancy. They were born very unwell at 33.2 weeks. It was a monochorionic triamniotic (MCTA) pregnancy (meaning all the babies shared a placenta but had their own amnion.) The mother was cared for by the Countess of Chester and Liverpool womens'. These babies sadly died, and the mother, suspecting incompetence, demanded a transfer to Liverpool Women’s. (Baby R survived.)

We noted that towards the end of the period of the babies in the Letby case, the Countess of Chester was booking more high-risk patients rather than receiving babies booked at specialist hospitals and instead shared care.

It is clear to us that this is something of a statistical anomaly; Especially when those who didn’t have a twin-related condition had incredibly rare comorbidities (collection of clinical issues) in pregnancy that left them very unwell once born. 

These diseases can be seen under the good care and monitoring of a tertiary level centre hospital such as, Liverpool Women’s NHS Foundation Trust, which going forward we will refer to simply as Liverpool Womens, but you may see written on documents as (LWH or LWFT).

There are of course, other similar hospitals best able to care for such fragile twin and multiple pregnancies, such as Birmingham Women’s and Children's NHS Foundation Trust (BWC), which we will refer to as Birmingham Women's, St Michaels now part of University Hospital Bristol and Weston NHS Trust (UHBW) and St Georges London.

The Connections and Networks.

In a document called “ANTENATAL MANAGEMENT OF MULTIPLE PREGNANCY GUIDELINE” (https://www.nice.org.uk/media/default/sharedlearning/706_706supportinginfo.pdf) written by a consultant in fetal and maternal medicine at Liverpool Women’s issued, issued to NICE on the 28th of March 2013, to be updated on March 2016. That we found via the National Institute for Health Care Excellence (NICE) in which it refers to itself as 

  “a tertiary referral Trust.” 

They state all the ways a twin and multiple pregnancy must be cared for. It states for example, that,

“For higher order pregnancies (triplets) all scans will be undertaken in the Fetal Medicine Unit, and the revisit schedule will be tailored to the particular pregnancy. Transvaginal scanning of the cervix should be carried out at 15-16 weeks, 20-21 weeks and 24 weeks of gestation.”

It also clearly states the monitoring and referral protocol for a woman having any multiple pregnancy and best practice in the event of something serious showing in pregnancy, such as these babies or when their co-twin dies.

It might, therefore shock you to learn that Liverpool Womens’ was then, as it is now the tertiary level centre hospital local to the Countess of Chester with a specialist centre, a Multiple Pregnancy Clinic (MPC) and a multiple pregnancy specialist, fetal medicine doctor, Dr Surabhi Nandha, during 2015 and 2016. 

Some of these babies, at least seven twins and multiples from four pregnancies were booked at Liverpool Women’s. 

Two are reported to have had TTTS, with one losing their co-twin and the other likely did. 

One set of twins was admitted to Liverpool Women’s for almost 3 weeks and was transferred to The Countess of Chester as there was an urgent need for them to be born ten weeks early, as they were very dangerously unwell. 

There is also a singleton known as baby I in the indictment that was born very prematurely at Liverpool Women’s and transferred as a neonate that was incredibly small for gestational age and born at 27 weeks.

Moreover, the first twins in the indictment A&B were booked at two London hospitals, but the mother became unwell when in the area, and was admitted to the Countess of Chester in the days prior to birth because of that. She did not give birth immediately and should have been transported to a specialist center, but she was not. 

It is unknown where Baby Q, the DCDA twin who lost their ectopic co-twin, was booked or where surgery took place, but given the highly specialist nature of such invasive surgery this would unlikely be at the Countess of Chester.

In the clearest of terms the question that must be answered is why were those babies moved from an expert hospital when they were seriously compromised?

We now introduce some of the team at Liverpool Women’s at the time. Dr. Surabhi Nandha (https://guysandstthomasspecialistcare.co.uk/specialists/surabhi-nanda/), who completed her medical degree in 2000 and became a Member of the Royal College of Obstetricians and Gynaecologists in 2009. Dr. Nanda led the North West Cheshire and Merseyside multiple pregnancy service there for four years circa 2013-2017. 

This year, a popstar called Jesy Nelson underwent TTTS in her twin pregnancy surgery, reportedly performed by Dr. Nanda and the other clinical lead in 2015 Dr. Andrew Sharp (https://m.facebook.com/TwinsTrust/?locale=cx_PH).  (She and her partner have subsequently fundraised for The Twins Trust. This, as you will come to realise, raises further questions.)

Dr. Andrew Sharp was another lead consultant at Liverpool Women’s. It has been hard to find any helpful information about Andrew Sharp but he was spending a lot of time during the summer of 2015 (May onwards) promoting the new Liverpool Womens Hospital, “The Harris Wellbeing Preterm Birth Centre”, which was opened in 2015 following a £1 million donation in 2014 from The Lord and Lady of Peckham (https://www.liverpoolwomens.nhs.uk/news/wellbeing-of-women-awards-a-1m-harris-research-grant/). 

They were also recipients of a Twins Trust (formerly TAMBA) and British Maternal and Fetal Medicine Society (BMFMS) research bursary in 2016 (https://www.bmfms.org.uk/bursaries_prizes/tabma_bmfms_bursaries.aspx) with Professor Asma Khalil of St George’s University Hospital, London NHS Trust (St George’s) (www.stgeorges.nhs.uk/people/asma-khalil/).

We can see that Liverpool Women’s was performing TTTS Surgery prior to 2015 and offered it in 2014 to a set of triplets. (https://www.sthelensstar.co.uk/news/17275393.four-year-old-triplet-honouring-memory-brothers-died-pregnancy/). 

In 2014, this TTTS surgery was carried out successfully on another set of triplets at St George’s Hospital, London (https://www.dailymail.co.uk/health/article-2890556/Triplets-saved-operation-womb.html). Therefore, treatment should have been offered and given. 

Why was it not carried out? Why, the one time it was, was the mother referred to a hospital not involved in this audit? 

Dr Surabhi Nandha referred one of the mothers after a long period of monitoring for laser ablation to King’s College Hospital in London (https://thirlwall.public-inquiry.uk/wp-content/uploads/2024/09/Thirlwall-Inquiry-23-September-2024.pdf). Why was this, with all the previously mentioned expert specialist centres en route, including the esteemed hospital Birmingham Women’s who was involved in the audit?

Birmingham Women’s is a leading hospital and the multiple specialist clinician called Professor Mark Kilby, (https://www.birmingham.ac.uk/staff/profiles/metabolism-systems/kilby-mark), who was researching a pioneering, revolutionary treatment to reduce disabilities in neonatal twins (https://www.birmingham.ac.uk/news-archive/2014/birmingham-researchers-pioneer-revolutionary-treatment-to-reduce-disabilities-in-neonatal-twins ).  Professor Kilby has had huge amounts of involvement collaborating with other professionals, (here named) in writing guidelines and carrying out research. He was involved in the construction of the Clinical Commissioning Policy: Management of Twin to Twin Syndrome by fetoscopic laser ablation (https://www.england.nhs.uk/wp-content/uploads/2018/07/Management-of-twin-to-twin-syndrome.pdf). 

Professor Kilby has worked extensively with The Twins Trust, and its Maternity Engagement Project (https://twinstrust.org/static/fc9b2326-a70f-4989-b64b3cafe05f3440/NICE-works-final-report.pdf) when Keith Reed (https://www.nice.org.uk/guidance/qs46/documents/multiple-pregnancy-topic-expert-group-members) was the CEO (https://www.infantjournal.co.uk/journal_article.html?id=7079). Dr. Nandha is now a trustee (https://twinstrust.org/who-we-are/about-us/our-team.html). The aforementioned Professor Asma Khalil is the clinical lead and face of the Twins Trust and now holds a senior position at Liverpool Women’s. 

Further examination of the professional network reveals a 2017 (embarrassing) paper, called “Antenatal Management of Multiple Pregnancies within the UK: A survey of practice” (https://pubmed.ncbi.nlm.nih.gov/32942079/), co-authored by Joanna Gent, Surabhi Nandha, Andrew Sharp, and Asma Khalil. Embarrassing because of the deviation from obvious national guidance for the mothers of the twins and multiples in the Letby case, as overseen by those charged with their perinatal care by among others, those authoring this very paper. This paper followed a survey which would have been carried out retrospectively, looking at the few years prior to publication.

The relevance of transparent data from institutions like Liverpool Women’s Hospital is reflected as said, by the information that some twins in the Letby indictment exhibited signs of TTTS and other twin and multiple pregnancy-related conditions and received antenatal care there. The question is why the Letby multiples were not treated during pregnancy and after birth at Liverpool Women’s and why, when they were along with other hospitals participating in the audits, studies and networks, sent and/or born prematurely at The Countess of Chester without the same capability and infrastructure?

This is why we MUST be interested in the obstetric history of the babies in the Letby case and unethical practices placing not only babies in utero at risk but also the mothers, and by proxy their families, caregivers and other healthcare attendants with a chilling causality that might make their value of other humans akin to heads of lettuce. 

Our investigation has closely examined the UK’s Twin to Twin Transfusion Syndrome (TTTS) Registry (https://www.medscinet.com/ttts/default.aspx?lang=1). Established in 2015 with funding from The Twins Trust (formerly TAMBA), its alleged purpose is to collect data on this serious condition affecting identical twin pregnancies, involving institutions like St George’s Hospital and other fetal medicine centres. However, since then, the registry has expanded to include ALL twin and multiple pregnancies. 

Inquiries to The Twins Trust regarding this registry, over several years, were met with significant resistance and the response that they do not hold the details, and they no longer work with the current “holder” of the registry Asma Khalil. Directed to said “holder." Freedom of information requests were made formally, both privately and publicly, which were not responded to. As you can see from their website, they do in fact still work closely with Professor Khalil.

Professor Khalil (https://newa.expert/wp-content/uploads/2022/03/E11475.pdf) completed a postgraduate Diploma in Advanced Obstetric Ultrasound COG/RCR) in 2007 and became a Member Of The Royal College of Obstetricians and Gynaecologists (MRCOG) in 2008, completing her Medical Doctor (MD) residency in 2009. 

A research professor whose engagements in various maternity endeavours can be found on the National Institute of Health and Care Excellence (NICE) Twin and triplet pregnancy Advisory Committee Interests Register 2019 (https://www.nice.org.uk/guidance/ng137/update/NG137/documents/register-of-interests) along with Professor Kilby: Which includes among other things a declaration that she has been “an Lecture and organise regular educational courses related to multiple pregnancy, both nationally and internationally since 2013”  

Professor Khalil has a master’s in epidemiology. She has a private practice on Harley Street and The Great Portland hospital ( https://asmakhalil.co.uk/) and holds a prominent position in fetal medicine, associated with the hospital previously mentioned St George’s University Hospital in London and, is now the director of fetal medicine at Liverpool Women’s Hospital (www.rcog.org.uk/about-us/governance/officers/professor-asma-khalil/).

Professor Khalil is the Vice President for Academia and Strategy at RCOG. She is the Obstetric Lead at the National Maternity and Perinatal Audit (NMPA), treasurer of International Society of Experts in Ultrasound for Obstetrics and Gynaecology ISUOG (https://www.isuog.org/about-us.html),  chairing the Twins and Multiple Births Association Maternity Engagement Project Steering Committee, a Department of Health-funded quality improvement project covering 30 maternity hospitals.  

Over the years, Kahlil has received over 15 national and international awards; the latest was Recognising Female Obstetricians and Gynaecologists award for female in gynaecologists and obstetrics (FIGO’s). She is also the co-founder of Gynaecology and Obstetrics Foundation of Greece (GEFOG) with Professor Simon Meagher (https://gefoghealthfoundation.org/faculty/), who is a consultant Sonologist at Mercy Hospital for Women, Melbourne. 

A patient advocate by the name of, Stephanie Ernst, endorses and collaborates with Professor Khalil to provide information for this purpose. Mrs Ernst’s website describes her as a digital Raconteuse, content artisan, writer, and speaker (https://stephanieernst.nl/). She further identifies as a published author, research participant as a parent, as a patient, and as a co-author. She also has a “sidehobby” working with the European Standards for Care for newborn health, as a voice for multiple birth parents, and the founder of The TAPS Support (https://www.stichtingtapssupport.com/meet-the-team/) and Vice chair of the International Council Of Multiple Birth Organisation (ICOMBO), https://icombo.org/icombo-board-members/. 

Professor Khalil leads the steering committee with two other members for the TTTS registry (https://www.medscinet.com/ttts/committee.aspx?lang=1) with Stephanie Ernst and Doaa Mohammed, a Clinical research fellow at St. George’s Hospital, which is now reportedly managed via MedSciNet and today involves 40 participating hospitals. She is also on the leadership team of the International Society of Twin Studies (ISTS), https://twinstudies.org/organisation/. The ISTS, in turn, is associated with ICOMBO (International Council of Multiple Birth Organisation), whose vice-chair is Stephanie Ernst.

This concentration of roles, where a relatively small group of individuals are key players across clinical leadership, research funding bodies, international societies, and the very registries collecting data, can understandably appear to the public as a system of self-appointing experts the likes of which the Letby case has been marred by and continues to be at the behest of. 

When  raising concerns about such intricate networks and the transparency of twin studies, there have been allegations of believing in a “conspiracy”. To be clear: we are not conspiracy theorists. Our work is rooted in thorough cross-referencing of available data. The persistent difficulty in obtaining straightforward answers and the dismissal of legitimate inquiries fuel our passion for uncovering the truth, and we believe this is in the public interest. 

This opacity inevitably leads to questions about whether clinicians’ and researchers’ interest, be they reputational, related to securing further research grants, or institutional standing, might, even inadvertently, influence decisions about data sharing or the promotion of certain research methodologies over others and worse still, prevent the course of public justice.

The extreme unwellness of the infants in the Letby case, and the apparent resistance to care for them could be answered by the previously mentioned national audit and the documented interest in studies around “conservative management” of conditions like Stage 1 TTTS as noted in a 2016 paper by Khalil et al. (https://pubmed.ncbi.nlm.nih.gov/27137946/) which referred to an ongoing trial comparing immediate laser surgery versus conservative management, raises profound questions (https://fetalmedicine.org/education/fetal-abnormalities/multiple-pregnancies/mc-twins-twin-to-twin-transfusion-syndrom). Clearly the infants who had TTTS in the indictment were beyond stage 1. It is by all accounts a progressive and fast-evolving condition. If conservative management poses a greater risk than active treatment, then the ethics of such trials and the potential impact on outcomes for babies like those in the Letby case demand full, unbiased investigation. 

Google Docs spreadsheet containing much of the information used in this post:

Spreadsheets link

https://docs.google.com/spreadsheets/d/1oZ-m12GmKruUvD6iZV7nIMGUt2A4S_y2hDKL6WtR5Bc/edit?usp=drivesdk

Disclaimer

The work I am undertaking with Professor Richard Gill is on a pro-bono basis. This is in keeping with all the work I have done with families who have experienced the loss of a baby, which has been done without charge.

If you would like to support my ongoing efforts and help subsidize my work, you are welcome to make a donation to my PayPal account. Your contribution will help me continue to offer this support to families and continue my work with Professor Gill.

Donate