LucyLetby.org

This is a guest post by Sarah Hawkins, the original is here, posted on her own blog: https://www.6monthsinvestigates.com/post/lucy-letby-triplets-to-singletons

6 Months Investigates, https://www.6monthsinvestigates.com/ is a joint enterprise with three owners/contributors, Sarah, Shannon and Elizabeth. These three ladies are dedicated to investigative journalism that uncovers social injustices and malfeasance.

People may be aware that I [Sarah] have been working with Professor Richard Gill over the previous months looking into the overlooked subject of the twins and multiples in the Letby case. This has in turn caused me to find areas of further concern in the care of the singletons. This blog, while inspired by looking at the Triplets O, P and their surviving triplet often referred to as R, has opened up questions relating to the singletons also. 

There has been a persistent concern for me regarding the Lucy Letby case, stemming from both the prosecution and defense perspectives. While the prosecution’s focus has narrowed to one individual and potentially three members of management, the defense is scrutinising other individuals, teams, or even one hospital. The recent announcement of further investigations into baby deaths at Liverpool Women’s, potentially linked to the Lucy Letby case, has prompted a deeper examination of the broader context.

Research into the triplets’ case specifically has raised broader questions concerning pregnancy care decisions, not only for these triplets and twins but also for other babies. The testimony of the triplet parents to the Thirlwall inquiry provides key insights. They stated that the consultant at the Countess of Chester Hospital referred the mother to Liverpool Women’s Hospital for a second scan, yet assured them he was content to continue care at Chester, with the option to refer back to Liverpool Women’s if problems arose. The parents found the Countess of Chester more convenient and accepted this plan. At Liverpool Women’s Hospital, they were informed that one triplet was smaller and, as all three shared a placenta, were offered the option of stopping the smaller triplet’s heartbeat to improve the survival chances of the other two. They declined this option which is just as well as the smaller one is believed to be the only survivor.

This seemingly patient choice is highly questionable given that the parents were unaware of the increased mortality rate at the unit in 2015 and 2016 until police contact a year later, and only learned of the nurse’s removal during her criminal trial in 2023. Legally, this lack of full information precludes true patient choice.

Further scrutiny arises from information suggesting that hospital targets and research initiatives between 2014 and 2017 may have inadvertently de-prioritized patient safety. The ‘Liverpool Women’s Annual Report and Accounts for the year ended 31 March 2015’ indicates that while antenatal care for multiple pregnancies at LWH adhered to NICE Guideline 2011 standards, it was recommended that LWH proformas, particularly for ‘Place, Timing and Mode of Delivery (PTMD)’, be encouraged. Midwives and obstetricians in the Multiple Pregnancies Clinical team were advised to use these forms. This suggests a recognition of the significant consideration required for twin and multiple pregnancies, even generally speaking.

The triplet pregnancy was, conservatively, a 1 in 100,000 occurrence but they are thought to be much more rare. All triplets shared a placenta, and the selective reduction (termination) of the smallest, believed to be Baby R (the sole survivor), that was offered, is standard practice even in triplet pregnancies as well as complete termination of pregnancy even where all of the fetus’ are equal size and have their own placentas due to the high risks associated. Many women having a shared-placenta twin pregnancy are also offered this. Therefore, a woman choosing to continue such a challenging pregnancy would presumably desire three healthy babies. It is highly unlikely that a mother with complete understanding and comprehensive and accurate information would choose not to travel up to an additional 45 minutes give or take for potentially better care. It is evident that in 2016, the Countess of Chester Hospital recorded a higher number of high-risk multiple pregnancies. This raises the question of whether this was a consequence of evolving care pathways between the two hospitals, particularly in light of LWH’s internal targets.

Liverpool Women’s NHS Foundation Trust’s Quality Strategy for 2014-2017 aimed to ensure that “no more than 10% of live births are multiples”. This document also articulated the trust’s intention to improve neonatal mortality, specifically “To deliver our risk adjusted neonatal mortality (deaths within 28 days of birth following a live birth) within 1% of the national Neonatal Mortality Rate”. Furthermore, it aimed “To reduce the incidence of stillbirths attributed to Small for Gestational Age (SGA) by 20% by early implementation of the NHS England saving babies’ lives care bundle,” with ongoing audits to track reductions in this category.

The objective to reduce stillbirths attributed to SGA impacts all pregnancy types, including singletons. Notably, of the babies in the indictment, at least 8 out of 17 pregnancies (12 out of 17 babies) were affected by SGA, and 5 out of 9 of those pregnancies (8 out of 12 of those babies) received some care at Liverpool Women’s, including all 4 multiples affected by diseases that are diagnosed by among other things SGA. This prompts inquiry into the adherence to the previously mentioned proformas.

The Trust’s 2015-16 Quality Report reiterated that reducing the incidence of multiple births was a priority due to associated risks of preterm birth and developmental issues. This report highlighted LWH’s low multiple live birth rate, meeting the Human Fertilisation & Embryology Authority (HFEA) target of 10% for fertility centers. It is unclear whether data collection for this target was isolated to the fertility center or encompassed general births.

Both Liverpool Women’s and the Countess of Chester Hospitals participated in relevant national clinical audits during this period, including the Maternal, Newborn and Infant Clinical Outcome Review Programme (MBRRACE-UK)

Perinatal Mortality audit. LWH submitted 100% of cases in 2015-16. However, the Countess of Chester did not submit its data. Liverpool Women’s had incentives to do so, including opportunities to join networks of centers of excellence and receive grants and bursaries, such as one from the Twins Trust (formerly TAMBA) between 2016-17.

In 2014, Wellbeing of Women awarded a £1 million ‘Harris Research Grant’ for premature babies, which opened in May 2015 and was extensively promoted by lead clinicians. Television shows, including an

ITV documentary titled ‘The Triplets Are Coming,’ and Channel 4’s One ‘Born Every Minute‘ further promoted Liverpool Women’s as a center capable of caring for vulnerable pregnancies.

Liverpool Women’s proudly stated in its 2015-16 audit that its neonatal mortality rate for booked births was below the national rate at 2.1 deaths per 1,000 live births. Even when including babies transferred for specialist treatment, their rate remained within 0.4% above the national rate, within the Trust’s target of 1%. Yet they transferred out, this statistic is not included. The importance of strict adherence to “improving” trust numbers becomes apparent when considering the financial incentives: in 2015-16, the total monetary value of income conditional on achieving quality improvement and innovation goals was £1,977,598, similar to the £1,955,007 received in 2014-15.

Given the numerous questions and target-driven motivations, it becomes challenging to solely attribute blame to a small number of relatively non-influential individuals. The Countess of Chester’s role in the care of multiple pregnancies is pertinent. While the initial triplet referral from the Countess where the mother was booked (a highly questionable fact) was to Liverpool Women’s Hospital, the option to continue care at the Countess of Chester was presented and accepted. However, the parents’ comments clearly indicate their decision was not informed, suggesting a potential shift or flexible approach to managing complex pregnancies between the two institutions.

Finally, the ‘Quality Strategy Liverpool Women’s NHS Foundation Trust 2014-2017 Version 2 February 2015’ outlines that, from April 2014, a new equality measure required providers to submit evidence that any service redesign or cost improvement initiatives had undergone an equality impact assessment report, reviewed quarterly by clinical commissioning groups. This mandates that any service changes must consider their impact on patients, service users, and presumably staff. Our ongoing research necessitates further investigation into the decision-making processes and inter-hospital dynamics concerning triplet and other multiple pregnancies during this period.

Sarah Hawkins

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

Sarah’s original: https://www.6monthsinvestigates.com/post/lucy-letby-triplets-to-singletons

Introduction

There are six multiple births involved in the indictment against Lucy Letby, babies A/B, E/F, I, J, L/M, O/P. Five mothers had been expecting twins and one mother, the mother of babies O and P, expected a triplet. Babies I and J had each lost their sibling in utero. The sibling of O and P survived. So, including the still births, we are talking about 13 babies of 6 mothers. Twins are obviously not rare, but twin births are not just ordinary births. Being one of a twin has enormous impact on fetal development and, after a successful delivery, neonatal health. I have been learning about this from an expert: doula Sarah Hawkins; herself mother of premature twins. She not only advises mothers to be but also campaigns for better antenatal care of twin mothers.

The multiple births in the Lucy Letby case had all had antenatal care from top hospitals specialising in multiple pregnancies, as they should, since particular complications exist which only specialists know about, such as TTTS: twin to twin transfusion syndrome. This happens when identical twins share one placenta, and one twin is actually providing nutrients to the other.

The antenatal care received by the mothers should have been an essential part of the medical notes reviewed by medical experts involved in the trial. As far as we know, it wasn’t. And obviously, those experts should have included obstetricians and experts in fetal medicine.

Sarah continues in her own words.

Sarah’s story

I found myself sitting in a garden in the Netherlands with Professor Richard Gill who welcomed me at his very traditional, and quaint Dutch house. If I were to stage a set of a retired Professor it would look just like this. Family art on the wall and mix matched furniture that serve practicality over comfort. Finding a wicker garden chair in the lounge was made ever more eccentric and adorable by the tennis balls on the feet protecting the original flooring.

I have had communication with a handful of people invested in this case on some level. I stood my ground and remained boundaried, upsetting a few people with my candour and sarcasm in the face of perceived disrespect until I felt I was speaking to someone who not only had the erudite and integrity but also the compassion and humility to meet me as a mother with much less education than he on the level. Mano el Mana. 

I decided to meet with him, having first connected around February this year when my wing-woman, ride or die, the Cagney to my Lacey Shannon Evans from Mississippi, emailed him. Meeting him I realise I had finally found someone who I feel has the commitment to being fair and thorough in making sure that any stone seemingly unturned is done so carefully allowing for all and any possibility.

I sat in his garden while many birds came to visit, providing a momentary distraction from a huge amount of chatting about our respective work and insights. He did not disappoint. He listened and I shared with him the following letter which to my delight and honour he was happy to share on his blog:

Sarah’s letter

Dear All,

This is written thinking of all the parents of babies who are no longer with us, or who have children living with lifelong and life-limiting conditions and disabilities directly associated with the Letby case. I extend my thoughts to others – those who have suffered similarly due to poor care, a terrible oversight, or something potentially caused by someone with an intent to harm.

I want to first say to those parents: I see you. I am among you.

Unlike many of you who have followed the harrowing details of the Lucy Letby case, I’ve had my own journey of neonatal intensive care as a mother of twins born prematurely at 31 weeks after a high-risk pregnancy in early June 2015.

It was because of this that when the news first broke, I had a very strong emotional reaction, and then I began to be more open-minded but with not much interest until I had a need to go over previous research.

This shared experience, though thankfully with a different outcome, compels me to speak not about guilt or innocence in the Letby case itself, but about the crucial need for informed discussion and the often-overlooked complexities of neonatal care, particularly for vulnerable multiples.

I really am not overly invested in passing comments on the specifics of the Letby case at this stage. My opinion could be as woefully unhelpful as anyone else’s, especially without a purpose and/or information steeped in evidential fact. My intention is to demystify some misconceptions. 

I am motivated by requesting a modicum of compassion and consideration, because whether you believe one thing or another, it is the casual ferocity of those continually passing comments as armchair detectives, spokesperson journalists, and appointed experts itself that I want to address.

I get it. When I take a break from catching up with the Biebers, I too have spent hours doom-scrolling on TikTok to see what the pundit detectives have discovered in high-profile cases. Could Nicola Bulley be seen amongst the branches of the tree in the water? What can be seen on the screen of the TV in the hotel room of Liam Payne?

As I fall asleep, I love listening to true crime. Stranger still, I listen to body language experts talking about blink rate and micro-gestures. There is a reason why the Discovery and History channels have had such success. Long-hand doom-scrolling, which, as Ricky Gervais so eloquently pointed out, makes one an expert in “sharks and Nazis.”

Shannon has her own podcast that covers crime and we have written and podcasted together about tragic yet interesting topics relating to twins.

I am also someone who understands the need to be right because I am almost never wrong, just like everybody else. I understand much less the need to be right about something in the absence of information. What I don’t understand is the need to stare down the lens of a camera, speaking with authority about something without the information, experience, or authority to speak about it.

But I have the authority to speak, and if so compelled, stare down a lens and/or write about what it is like as the mother of twins born prematurely in 2015 and whose babies were admitted to NICU. They were born at the same gestation and occupied little Perspex boxes at the same time the first two precious twins were in the Letby case. I can speak with authority about the poor care I received in pregnancy, that my own daughters almost died, and is the reason one of them struggles to this very day as a consequence.

I can also speak with authority as someone who, as a result of my own family’s experience, campaigns for better care for those experiencing a twin or multiple pregnancy. I can speak with authority as someone who has worked in maternity care for five years and has seen the good, the bad, and the ugly. I can speak with authority as someone who has gone above and beyond to understand the conditions that affect twin and multiple pregnancy and birth.

Through my campaigning and work, I have had the pleasure of meeting some incredible families, and some of those include those who have suffered the loss of one or all of their twins and/or multiples. I have supported families in understanding what happened that led to the loss of their cherished children.

From my perspective and with the insight of all the above, it doesn’t matter what YOUR personal belief is. It matters how you share it and our stories.

Twins and multiples generate huge amounts of wild fascination and intrigue. The one disheartening constant is that, for one reason or another, this wild fascination doesn’t extend to protecting those that people seem so intrigued by. I encourage those intrigued to respect, care for, and support the twin community and not capitalize on it.

If we consider parent victims and advocates in the UK, such as Denise Bulger, the mother of James Bulger, or Baroness Doreen Lawrence, the mother of Stephen Lawrence, we see two women who, during a time without social media and TikTok evangelists, had space to stand tall and share their own children’s stories. However, whether it is because of a risk to an ongoing investigation (which every keyboard detective will certainly affect) or because the keyboard detectives are drowning them out, the parents in the Letby case have no voice.

My perspective, while not clinical and perhaps from an “outsider” position within the traditional medical hierarchy, is rooted in empowering families to navigate the system and advocate for the best possible care. This includes fostering a strong relationship between clinicians and families to achieve optimal outcomes. However, a critical aspect of this is ensuring that women with high-risk multiple pregnancies, like those monitored for multiple pregnancy-related conditions for extended periods, are not moved unnecessarily, especially outside of an NHS network equipped to handle their specific needs. If a trust is managing such a case, it absolutely must have access to a neonatologist with specialized knowledge of these conditions. The inconsistencies and “dysregulation” of services across the country are a significant concern today, as they were then. Collaborative and continuity of EXPERT care is vital before, during, and after birth. This is especially important when the twins or multiples share a placenta. The reason for this is because there are two conditions that affect only these types of pregnancy. 

The science of it all, in simple terms using twins who share a placenta as an example: First, what is a placenta? A placenta is like the roots of a tree. Blood is pumped out of the heart and travels into the umbilical cord, and then when the umbilical cord hits the placenta, it branches off into a series of roots or blood vessels. Each root, or little blood vessel, goes and finds a small area of its own placenta. Making this make sense, research specialists in fetal medicine developing new methods of fetal surgery discovered some rather amazing things. The placenta is made of many separate little placentas. Each little placenta has one blood vessel taking the deoxygenated blood away from the fetal heart and one coming out full of oxygen-rich blood, full of all the good stuff babies in utero need. One vessel in and one vessel out. Well, there are many of these little placentas that are stuck together, but each little placenta is supplied by one vessel going in and one vessel coming out, independent of each other. In a twin placenta, there is a cluster of these little placentas that belong to one baby and another for the other baby. Then there’s a group of little placentas in the middle where a blood vessel goes in from baby one, and then a blood vessel from baby two comes out. A shared placenta is not one placenta but three.

There are two conditions that are similar insofar as one baby will get an unequal share of blood due to these little shared placentas. However, one is very rapid in its evolution, while the other is slow. If the neonatologist caring for these babies does not have the experience to discern one disease from the other and they make the wrong treatment decisions and actions, the newborns can and do on occasion die.

Often, in pregnancy women are told their baby is not growing as well. Clinicians might understand this to mean various different things, including blood flow, which is also plotted on a growth chart that looks similar to the one they use to plot the growth of the head and abdomen.

A bit more about the mysterious phenomenon of twin and multiple pregnancy that will, God willing, assist me with landing this super important point: The placenta and everything that surrounds your baby that is born with them is entirely their DNA. A huge amount is known about how cells behave differently in twins and multiples, but also fetal growth patterns are unique too.

This does not mean twins and multiples are by default weaker when born; in fact, in some ways, they cope better with some aspects of prematurity. They don’t always have to be born early. In fact I have supported several women to get to an advanced gestation with expert care who gave birth vaginally to perfectly healthy babies, at term around 40 weeks.

However, and this is an important caveat, thorough monitoring is a huge benefit when more than one baby shares a placenta. The mismanagement and failings in care stem from a failure to recognize and act decisively on early warning signs. Too often, women’s legitimate concerns are dismissed as typical twin pregnancy symptoms, leading to missed diagnoses of serious complications. The solution lies in a proactive approach: regular, expert-led ultrasound scans that specifically look for the indicators of high-risk twin and multiple conditions.

The health of all babies can be seen on an ultrasound. Crucially, with twins, these scans must include Doppler blood flow measurements in vital fetal vessels to assess blood flow, hemoglobin levels and to see which organs are getting a good supply. Any identified abnormality should trigger an immediate referral and appointment “not tomorrow, today”, as Professor Kypros Nicolaides implores. This should be to a center equipped for intervention. The underutilization of readily available Doppler technology during routine scans is an issue, as it can leave diseases unseen and untreated. Treatment in good time has a very high success rate. Sonographers should be trained to perform these quick but critical assessments themselves, even with bedside machines, rather than delaying care with negligence and “deferrals”.

My concerns during my twin pregnancy were ignored, and what we know now about monitoring for these conditions, we knew then.

My intention in sharing my story and these observations is not to contribute to the cadenza of speculation surrounding the Lucy Letby case. Instead, it is to shed light on the often-murky underbelly of high-risk pregnancy care and neonatal services, particularly for incredibly vulnerable babies born to multiple pregnancies affected by any additional risks.

My observation from supporting twins and multiples across the country is that care is well under par, and as many clinicians are bluffing now, as they were then. The NHS is now in a pursuit to discover with Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE) what is causing deaths and disabilities to babies and women during the maternity period.

I will do my best to help you understand the nuts and bolts of it all. There are a number of “highly sophisticated” methods of inquiry the NHS or national health services are implementing in order to, for example, find out why the mother of South Asian heritage who was receiving poor care had a stillbirth, or why the Black woman had a late miscarriage.

First of all, the hospital or trust sends the baby/fetal tissue or placenta for pathology and histology, and then, if the baby died after 22 weeks’ gestation, the clinical team meet in what is called a Perinatal Mortality Review Tool (PMRT) meeting, where they do the scientific equivalent of marking their own homework before sending it to MBRRACE. Who knew systemic failings can all be found in the fetal tissue itself? What does that mean? How could such a scientific line of inquiry fail? I hear you say.

Britain has a distinct lack of neonatal pathologists; however, fear ye not, they will cast a wide net, finding any pathologist, and a histology report might be conducted by a geriatric cardiac specialist pathologist. Then they give their non-expert expert opinion, it is taken as fact even if the disease they point towards doesn’t exist.

The fact is, in British maternity services, we are at the mercy of non-expert experts caring for women who require expert care, and then when the shit doth hit the fan, we have non-expert experts giving their non-expert expert opinion, and then all is concluded.

If we just go back a little bit further during pregnancy, we can factor in the use of locum doctors on locum contracts; the expert caring for you during pregnancy could be for example a podiatrist. There is nothing wrong with podiatrists, but do you think an obstetrician can expertly treat foot rot?

Then you (who I wish I had some faith that you all mean well), the commentators, come in with your non-expert expert and personal theories, adding another dimension of non-expert experting.

While MBRRACE is playing clueless, finding the fetus in the utero with the placenta as the weapon, we have you, the COCH players, finding consultants in NICU force-feeding babies any number of vaccines from a syringe previously used to catch droplets of contaminated water from the leaking sewer pipe. These are people’s babies you are talking and making wild stabs in the dark about.

Let me let you in on a little secret: you would be hard-pressed to find a NICU, maternity, or labor ward that doesn’t have a leak, and those that don’t will have more than enough deficits that a bacterial infection could be the least of your worries.

My girls’ NICU had a leak. It also had social admissions on a revolving door policy. What is a social admission? Allow me to explain using my own experience as a NICU mum in early June 2015.

I am an over-sharer and an under-shearer. You will understand the relevance of this perfectly executed joke as we go along, so bear with me and forgive the bad jokes; humor is my love language. Who knows, maybe the general attitude towards pregnant women that I have also experienced has eroded what little dignity I might have had.

I have become accustomed, as most multiple parents have, to the high number of people interested in how I conceived, so let me get that out of the way: gin, tonic, Halloween, and missionary.

My twins shared a placenta, and I was unbelievably pathetic compared to most twin mums. Why did I go into spontaneous labor at 31 weeks?

My girls developed Twin Anemia Polycythemia Sequence (TAPS), and I got lucky, we got lucky. TAPS is one of the two conditions that only twins that share a placenta can develop in utero. I was in and out of hospital. I was going in and out of labor, I changed hospitals, I begged to be scanned whereby it would have been seen and I could have been treated, but they refused to afford me any beneficial care.

Was it the TAPS that caused the premature labor? There is no evidence that it does, but it is so rare and underdiagnosed, and when treated, they will often deliver early (ready for the baaad joke?). It was either that, or it was the moving from a seated position to standing in order to trim my fleece in the bath that was not shorn as my waters broke; hence, my children came out like marines in Platoon.

Our pregnancy and care was in many ways so dehumanizing and bewildering.

I gave birth vaginally to my daughters, and the carnival of strangers left the room. The lives that were once as close as any humans can be inside my womb and physically attached and reliant on me and each other due to their shared placenta were whisked away from me. My legs were numb, and I was entirely alone, waiting for a wheelchair to take me to NICU, their home for the next two and a half weeks. My partner and 13-year-old son were with them, so at least they were not alone, and at that time, that is all that mattered to me.

Finally, some two hours after they were born, following several requests and pleas, a wheelchair was found, and I was taken down to my newborn children, my heart racing ever faster the closer we got.

A set of double doors opened, and I was no longer in the Victorian building but somewhere that resembled the Starship Enterprise. To my right were metal sinks, and someone gave me precise instructions on how to wash my hands; dazed and confused, I followed dutifully.

I could have never imagined how, when gripped with so much fear, one gives themselves over in these situations with blind faith and trust in those tasked with caring for our own children.

I am taken down a corridor to another set of doors and through into the room my babies are in. I was not prepared for what met me. My babies were on opposite sides of the room in separate incubators. The last time I saw them was immediately after they were born when they were momentarily on my abdomen, and now they were alone, wires everywhere.

No one can ever prepare a parent for the likelihood that they might not immediately be able to not only hold their baby but also stare at their beautifully formed face. NICU is not something anyone gets over easily.

A McMaster University study of 7,755 children and adolescents has found that “NICU graduates” (an odd term used by the researchers for those that went to NICU and didn’t seemingly fail, perhaps? Are they graded upon graduation? I digress) they had a nearly doubled risk of any mental disorder later in life, irrespective of their birth weight. Core outcomes revealed that NICU admission significantly increased the likelihood of any mental disorder, multiple mental illnesses, separation anxiety disorder, specific phobia, ADHD, and oppositional defiant disorder. This elevated risk for any psychiatric problem, multiple psychiatric problems, and oppositional defiant disorder persisted into adolescence, as reported by both parents and the adolescents themselves.

They are now conducting studies looking at the older siblings of children that go to NICU.

Similarly, we have many studies into the effects on parents and also those who work within NICU. No one comes out unscathed.

My girls’ incubators: one box glowing vivid ultraviolet, the other one covered in a blanket. Willow in her blue capsule is wearing an eye mask and curled up in a little nest, and both she and her sister Kitty have CPAP masks strapped tight against their tiny little faces, the faces I had waited so long to see.

A young nurse spoke to me first, and I was instructed on how to touch them, how to interact with my own babies. “Premature babies’ skin is very sensitive,” she said. “Don’t stroke them, firm touches only, place your hands on them and don’t move them too much.” I don’t know how I even heard her for all the beeping, beeping I had only heard before during the final nine days of my grandmother’s life.

Scared, I looked to the nurse and I begged her through tears to promise me they will be okay. How could she say no? I didn’t give her the option to say no. She looked into my eyes and said “yes.” I implored her to promise me, and less convincingly, she replied, “I promise.”

I was 35, and my partner was 29. His first children; he changed his first nappy while his babies were in the incubator.

The nurse was younger, in her mid-20s. Imagine the weight of responsibility?

I hear people talking about Letby and her encouraging families to take breaks. This is common practice. I struggled to establish my milk supply, had a chronic illness and a severe uterine infection, and needed to recover. It wasn’t just one NICU nurse who encouraged taking breaks, getting fresh air, something good to eat, and sleep; it was everyone. Were they devious? I believe not.

I have also heard that Letby became fond of the infants she cared for. It is my experience that not only do NICU nurses enjoy caring for twins but that continuity of care leads people to create a bond. My own babies had two nurses. We liked them both and the only upsetting issue I had with them was when one of the nurses decided to dress my babies for the first time. I wanted to be the first to do that. She was very upset she had upset me and explained she thought it would be a nice surprise. Of course I forgave her but these seemingly small actions can be quite upsetting for parents so disempowered. With that said there are things that Letby did that I personally have not done however I have known others to do so.

In my work I am very rigid and while I have pictures of me with my clients and their babies I don’t share them, I also don’t post any image of a birth on social media without expressed consent. I received a card from a client with her baby on and I am rather ashamed to say I would have to look to find it. But I am not a baby person but for my own. I have known many people within maternity from Drs to Doulas who have pictures of the first babies they were at the birth of and who hold onto keepsakes. It is in my opinion and my opinion only inappropriate but perhaps people may consider my approach a little disconnected on the face of things.  The fact is all of the above is perception and lacks any basis in fact. I am incredibly warm towards my clients and still know them to this day but I don’t have keepsakes. I mention the above only to try and encourage analytical thought particularly on behalf of those who have for whatever reason made judgements about me based on someone else’s opinions.

My girls are now almost ten, and apart from tiny pinprick scars on their hands and feet from the IV lines, there are no lasting visible scars from their time in NICU. Had it not been for NICU, they wouldn’t be here today.

I have worked in maternity for almost five years. The reason I didn’t do so sooner is because I was only able to look at the pictures of my own twins three years ago and spent an entire day sobbing. It broke me; it broke us. It was due to my later training as a birth doula that caused me great concern about poor information and people seemingly not understanding what “evidence-based” means, which led me to campaign.

As my children grew up, while they look identical to most people, they act very differently. I was fixated on the idea, as is perpetuated by psychology with its focus on twins and the twin model, that if one had what looked like autism, so too would the other. Then, by chance, I met someone who asked the right questions about my birth, and it was that which caused me to contact my children’s pediatrician/neonatologist to ask whether he could review their clinical notes and consider if they, in fact, had Twin Anemia Polycythemia Sequence (TAPS), one of the two conditions previously mentioned. It was not mentioned at the time, however, their clinical picture looked like it could well be, and the fact that my “donor” twin was struggling developmentally. He did just this and diagnosed, at the age of six and a half, that they did, in fact, have TAPS. I requested their clinical notes, and it was the first time that I saw that my twin who struggles was born with severe acidosis, which is found in the blood of babies who have experienced a hypoxic event, a lack of oxygen to the brain.

Thinking about now versus then, has anything changed regarding the care I and my girls received? What I can say is that there were many changes circa 2015, and they followed inquiries into terrible crimes against children, inquiries that again took years to complete and concluded with the decision that the answer to the issue of child abuse would be a central reporting system. There is zero evidence that this has had any beneficial effect. This is where the social admissions come in. A social admission is when a neonate is admitted to NICU without a clinical need because there is a concern that the child’s parents are a risk to the child, or there is some history of domestic violence. They do this because NICU has a higher number of staff and high security for entering and leaving. My girls’ NICU was not busy, and there were empty cots. I remember only three other families, and two were admitted due to social admissions. I was evicted from the parents’ room while trying to bring in my breast milk to accommodate a mother who was at risk of domestic abuse. Of course, this meant I had to make a forty-minute journey to be with my babies, and this impacted my early milk supply. Social services should be supporting families like this and can access funds for parents to stay close to the hospital in a safe house or perhaps offer local accommodation to parents like me instead of on-site accommodation. Beyond my personal grievance with this, of course, they pose a significant risk to all babies who need to be in a sterile environment receiving a good standard of care. Staff must be focused on babies who require clinical support and not guarding children whose parents are being assessed for safeguarding reasons. There is also an increased risk of bacterial and viral infections being brought into a NICU unit.

Not only have these measures failed to benefit anyone, but they also serve only to make things so much more complicated for any number of government agencies that may be tasked with overseeing that area of provision.

The idea that in 2015, like now, there has been some kind of cultural or moral tectonic shift and children, babies, women, families, and clinicians are safe is beyond naive.

Try this: pick any service provided by government money, whether it be waste and recycling, education, or health, and file a complaint about something you are unhappy or concerned about. Just one complaint, and don’t give up until you have a result. Exhaust every channel and go to every regulatory body, even go to your union. Just don’t give up and see how far it gets you. If you don’t start drinking at airport hours, talking to the weeds in the garden you have been too busy to manage, or die of natural causes, please let us all know how it went and whether you got justice or any remedial action. You might end up being considered the problem.

Goodness, now imagine if you did that with a continual commentary from people who don’t know you professing to know exactly what happened when they don’t have a clue and amount to people making wild stabs in the dark. People who would otherwise be entirely credible making discrediting comments.

Where my work took me with twin and multiple families includes those who have lost children and suffer misplaced guilt. It is like a weighted vest. As someone looking in, as we are blessed that both our twins are here, losing one twin or multiple children is a complex tragedy because if you lose one baby, you have anniversaries and moments where the memory of them passing comes to mind, and mourning and grief can pour out of you. However, with twinless twins or triplet-less triplets, every birthday, milestone, and celebration serves as an anniversary of the one who passed. Often, when families lose all of their multiples, it too can amplify the grief, as it is seldom the case that both babies simply pass away, whether in utero or as newborns, at precisely the same time.

Every time someone from social media casually suggests something as being a fact about any one of the infants, they add another layer to this misplaced guilt.

Those on the side that agree with the prosecution that it was Lucy are almost certainly going to cause parents to question their judgment every single time you comment on it. They may ask themselves whether they should have noticed something about her that pointed towards her being someone who could commit such crimes. They may well ask themselves if there was anything at all they did or did not do that meant there was an opportunity for their child or children to be harmed. They may forever feel a sense of guilt about leaving the cot side for whatever reason they did, if they did or when they did.

Those who do not agree with the prosecution and believe in Lucy’s innocence may cause parents to question in a different way, or they may simply feel nothing but anger and frustration as their feelings don’t seem to factor in but to pick it apart. Beyond whether it was or wasn’t Lucy lies another world of self-blame. Some of the points and questions made about what might have “really” happened may cause parents to question themselves and each other.

Was it Lucy? Were we wrong, or did we miss something?

Who was it? Was it someone we felt we could trust, and was our trust the cause of our babies’ suffering?

Was it a vaccine? Should we have refused a vaccine?

Was it this vaccine? Why did we agree to a vaccine, and could the vaccine have caused what happened?

Was it a virus/bacteria? We should have taken better measures to keep good hygiene when touching our babies. Should we have given birth somewhere else?

Was it a study? Did we sign up to a study, and if so, did that cause what happened?

I know this because, to this very day, while I have both of my twins living their best life despite a degree of difficulty, we ask ourselves questions all the time. In my work, I have had appalling things said about what happened in my own situation. With people who know nothing about the circumstances and without the benefit of information, they make remarks that directly place the blame with me in some way.

I have personally tried to make contact with other commentators and “experts”, and I am ignored or, controlled and worse still, treated in the most callous and dismissive way possible.

I am asked if I believe one thing or another, which I do not, and I am very grateful I am not the person who is tasked with that ultimate question. My research tells me that there needs to be a retrial, not only for Lucy Letby to have a fair hearing but also for the families.

I am asked if I can get a clinician to corroborate my concerns, which is highly insulting as it is by choice that I am not clinical, and I have taught clinicians. I was even sent a conversation between two clinicians that was so rudimentary it infuriated me because their testimony is considered better than mine.

I have been told by one journalist, with whom I had one brief five-minute phone call, that after twenty-five years, she could tell I was untrustworthy and referred to my partner, another parent victim who is part of our story, as a proxy.

There are questions that need answering because among the infants in the Letby case (including sibling stillbirths) are thirteen multiples born to six mothers; three pregnancies that we know with a degree of certainty shared a placenta and had some treatment for the conditions I mentioned. This is a significant and questionable anomaly, as is the “National Maternity and Perinatal Audit” carried out by the NHS looking at “Maternity Care for Women with Multiple Births and Their Babies.” The study examined the “feasibility of assessing care using data from births between 1 April 2015 and 31 March 2017 in England, Wales, and Scotland.” This audit saw the perinatal mortality or death rate halved. It has since shot back up. The Countess of Chester was not participating in this audit, but the hospital that was best equipped to give specialist care was, and most of the mothers had received some antenatal care at that hospital.

The outcome of this audit led to funding and centers being given control over the care of multiples. I am concerned that potentially the protection of numbers for the benefit of funding then, and continued funding now, is leading to women who have high-risk multiple pregnancies not being under the care of specialist centers that have signed up to input data into all and any twin and multiples-related database, including one that raises ever deeper concerns.

How do I know all this? Because I lived it. I worked in maternity. I knew very influential people, and I have seen, heard, and experienced things that make me an expert in this area and able to evidence this all with evidence unique to me and with information found in the public domain.

To the Letbyists, no, it might not be easy or a quick fix, but I am motivated beyond Letby, and I cannot make complex information simple. With that said, as Shannon would say we have seen an awful lot of sitting rather than pissing and getting off the pot.

By Sarah Hawkins

Editing By Shannon Evans.

Statistical Issues in the Investigation of Suspected Serial Killer Nurse:

Transcript of a lecture given by myself, Richard Gill

Slide 1.

I have given this talk to several different audiences so far, with different backgrounds and knowledge. All I ask is that you, the reader, have an open mind; an open mind to the possibility that the young lady on the right (Lucy Letby) might perhaps even be innocent, certainly I hope that you are open to the possibility that her trial was not completely fair and I hope you are open to the possibility that the preceding police investigation was not completely fair or unbiased either.

I am a scientist and a statistician. I certainly have opinions about Lucy Letby’s innocence. I see no reason to suppose she killed anybody actually and I believe that I have very good reasons for thinking that. My opinion is based on what I know about the science, and I know a lot of things that certainly the jury did not know, though which anybody can look up on the internet these days. Of course, we don’t know how reliable everything is. Obviously, you mustn’t believe everything you find on the internet. I do think there is powerful evidence for her innocence out there now which was not shown to the jurors and certainly not shown to the public during the trial. I hope there will be a retrial and that this evidence will be properly validated and used.

I am interested in Lucy Letby case because I was previously very much involved in the case of the young lady in the picture on the left, Lucia De Berk in the Netherlands. The picture was taken in the good old days before she became a suspect in the murder investigation and before she became convicted and widely known to be the most prolific serial killer nurse in the Netherlands, both of babies in a children’s hospital and of sick aged people in other hospitals where she had worked earlier. You see her here in around 1993, the photo taken by a friend around Christmas time (I know them both). I am not sure if she was already working as a nurse at that time. She was then about 30 years old, she already had a husband and a daughter. The photo was taken by her friend Carol Edrich, who Lucia met when Lucia was Carol’s cleaning lady. Carol had encouraged her to become a nurse, and so she did.

Lucia’s trial and tribulations began in 2001. A baby, Amber, died unexpectedly in September a few days after 9/11, and some people at the hospital thought the death was surprising and unexpected, though others at the hospital were not surprised at all. But this event certainly combined with suspicions which some doctors at the hospital previously had about Lucia, and there was gossip at the hospital because she certainly had a colourful life up to then. There were lots of weird things that were said, and she was one of those nurses who stands out in a crowd, says what she thinks, speaks up when things are not being done right and she did not let herself be walked over by anybody. Some people found her very odd, and some found her a bit scary; many on the other hand liked her very much.

In no time there was a police investigation and immediately Lucia was the key suspect. She was arrested in December 2001. There was a first trial in 2003, and at that trial the main evidence against her was statistical evidence. Statistics is of course my field, so that interests me, and it is statistical evidence that I see as linking these two cases even though in the Lucy Letby case there was no statistical evidence used apart from the spreadsheet which I will come to soon. At Lucy Letby’s trial, neither prosecution nor defence, as far as we know, employed a statistician or an epidemiologist, and there was no talk about statistical data and statistical analysis.

In the Lucia De Berk case, at her initial trial which resulted in her conviction for a number of murders and attacks, the main piece of evidence was a probability. calculation resulting in the chance of 1 in 342 million if I remember correctly, and it was calculated by a friend of mine who I respected very much, and at that time we the public but also professionals didn’t know exactly what he’d done but I knew he was at least a competent person and he got this number 1 in 342mil. Many people misunderstood it, it was not the chance that she was innocent, it was supposed to be the chance that were she innocent and were the coincidences between her shifts and bad things happening completely due to chance, what was then the chance of such an extreme coincidence or correlation or association. So it was that 1 in 342 million, was not the probability she was innocent, but it was the probability were she innocent and was everything just due to chance, then the probability that there would have been such extreme associations between her presence and the deaths. That same expert said obviously my hypothesis is wrong because we don’t believe a 1 in 342 mil event happened so there is some meaning behind it. This is a correlation and real and something causing it. He gave a list of possible causes and only one of them was that Lucia was murdering people which obviously would have been one explanation.

One of the big differences in these two cases is that he Netherlands case is done according to Netherlands criminal prosecution law and we do not have a jury, we do not trust a bunch of average people off the streets to decide guilt or innocence, we prefer to have a judges bench of three professional judges who have been to university, studied law and are very experienced. We have what you might think of as an inquiry by a board of judges, a chairman and two others, checking what the prosecution says is correct. We like it that way much better. This is due to differences to culture and history, but it’s a big difference between that and a jury trial that we have in the UK. Inquisitorial versus adversarial are the technical terms for these two kinds of trials. Inquisitorial trials the judges run an inquiry, they are free to call scientists and witnesses and experts, and they can change things on the way as they go along, but many things are agreed beforehand. There are pretrial meetings with judges and barristers (or the equivalent of) and scientific experts are very different category from ordinary witnesses and treated differently.

At the end, the judges give their verdict, and they have to write up their motivation and reasoning for their verdict, whether they have used logical deduction to reach their conclusion, and this is published. This is an advantage for the defence of the Netherlands system because it means you can see what the reasoning was and if you can see a gap in the reasoning, you can attack it and use it in an appeal. If you see evidence being used and being crucial and if you disagree with that evidence for example scientific evidence that you think has been interpreted wrongly, you can point to that. I think such trials are fairer than the English ones in cases like this which are so complex and with so much evidence, as so much careful thinking has to be done to reach a reasonable decision.

The initial conviction of Lucia, at the lower court, where she got a life sentence, was almost entirely based on the statistical calculations. Immediately that was very controversial and lots of people wrote letters to newspapers saying you can’t do that, you can’t convict just on the basis of a probability calculation, it’s just not right. Also, statisticians started fighting each other because there are different kinds of statisticians, so they started quarrelling in public, as they tend to do, and arguing that the wrong statistical paradigm was used, and it should be Basian rather than frequentist. That was an interesting discussion and it certainly meant that there was an appeal. There was a new trial and that was quite rapid, a year later, and again Lucia was convicted and this time actually of more murders and more attempted murders ad the judges wrote explicitly at the start of their 150 page motivation (because it was a complex case) they wrote out exactly what they were so convinced of that she was such an evil person and how they came to that conclusion and the evidence which convinced them. It was the longest summary (called the ‘arrest’ in the Netherlands) in Dutch legal history. On the first page the judges are very explicit, the court does not make use of a statistical calculation; this is not statistics, no statistician has calculated the probability of this, they are not interested in that. It goes on to say Lucia is convicted by us on the basis of irrefutable scientific and medical evidence. That is very clear.

That stopped all the discussion in the press and amongst the public, on the nascent social media, about the statistics in this case because it was just medicine, and it was definitive and proved. Not many people read those 150 pages. That was in 2004. The defence made one more attempt by going to the supreme court because some evidence got forgotten and had stayed in a drawer at the forensic institute and it was said to be exculpatory but had arrived one day too late to be used in the trial. The supreme court turned down the application, but they did do one thing; Lucia had been handed life sentence, but the length of a life sentence is only 30 years and if you behave you can come out earlier. The judges were so convinced of her guilt and evil character that they tacked on to that life sentence, indefinite incarceration in a closed psychiatric hospital thus making her sentence a full life sentence.

Amusingly that was the 2004 verdict and sentence, and the supreme court removed that addition of the psychiatric bit because as they pointed out a psychiatric investigation had been done into Lucia’s state of mind and it had uncovered several disorders (everybody is weird in one way or another and all these have labels and names and pharmaceutical companies have made medicines to sell to you for them). But there was no psychiatric issue which she had which could be associated with her crimes. Therefore, she could not be sentenced to time in a psychiatric hospital because there was no treatment she could receive. That was 2005, so the sentence was reduced back down to the life sentence (not full life).

That was exactly a time when a couple of whistle-blowers started getting active and there was a philosopher of science professor (just retired) and a senior medical doctor, a brother and sister. They had personal connections to people at the hospital where Lucia had worked and had some inside knowledge and were careful not to use it. They started to talking to journalists and journalists starting stirring things up. An application was made to the Dutch equivalent of the CCRC (Criminal Case Review Commission in the UK). There is one in the Netherlands which was started at the same time as the UK, for the same reasons, as a result of enormous scandals of miscarriages of justice, involving either the police with tunnel vision or involving use of the wrong experts who weren’t actually experts and misinterpretation of scientific evidence.

So, exactly the same things as in the UK. And that team also published a book which was available in bookstores. Lucia’s case was completely closed, there was no contempt of court involved in this in any way (contempt of court rules are rather more reasonable I would say that the British ones). They started stirring things up, and a long process started which eventually only by 2010 (it took 5 years and we thought it was such a long time), it took 5 years to stir things up enough to get things working and to get the wheels in motion such that there was a new trial started in 2009. Lucia walked free in 2010 because there was a new trial, a fair trial, new evidence or at least new interpretations of scientific evidence which were much more plausible. And moreover, the public was also convinced by them and everybody (bar a few probably) now knows that Lucia was completely innocent. If you know a bit about the whole thing it is totally implausible.

It was 2005 when I got involved. It was a friend of mine who was very involved, a statistician. He got very upset by the fact that he discovered, that though the judges had said there was no statistics involved, the statistical thinking still reverberated through all those 150 pages of summary. Indeed there were doctors who said explicitly “normally cases like this would be seen as completely normal and natural, but because Lucia had been there and was there so often and I can’t explain it, I am inclined to believe that this particular death was unnatural”. So that ‘irrefutable scientific medical evidence’ was actually based, in part, on an opinion by medical doctors whose opinions were contaminated by the fact that they knew that a nurse was being investigated for a crime and she was always there when things happened. This was fact, she was surprised, it was a bit unusual, I have a probability calculation coming out of my 150, I would say that’s bad luck, maybe grounds for an investigation.

This website is dedicated to obtaining a fair re-trial of Lucy Letby, the British nurse given a full life sentence in 2023 for murders and attempted murders in the neonatal ward of Countess of Chester Hospital, during 2015 and 2016. This is a project of the Foundation Science for Justice – NL, https://www.science4justice.nl