Genomics and Stillbirth: What midwives need to know and why it matters

Series 16 - Episode 8: Genomics and Stillbirth: What midwives need to know and why it matters

Stillbirth is a deeply challenging outcome of pregnancy, and families often look to their midwives for answers and support. In this session, we’ll explore where genomic testing is becoming a valuable tool in understanding the causes of stillbirth—and where its limitations lie. Through an illustrative case study and discussion of real-world pathways, we’ll highlight how midwives can play a key role in communicating genomic information, supporting informed decisions, and guiding families with empathy and clarity.

Hosted by:

• Sue Macdonald, Midwifery Expert; Host and Curator, Maternity and Midwifery Festivals/Midwifery Hour, Editor, Mayes Midwifery

Contribution from:

• Tina Prendeville , Lead Midwife, North Thames Genomic Medicine Service Alliance and Senior Research Midwife, Imperial College London
• Denise Barnes , Lead Midwife for Genomics, North East & Yorkshire Genomic Medicine Service Alliance
• Emma Tomlinson, Specialist Rainbow Clinic Midwife, Tommy’s

Biographies

Tina Prendeville

Tina is the Lead Midwife for the North Thames Genomic Medicine Service Alliance (GMSA) based at Great Ormond Street Hospital, and hosted by Chelsea & Westminster NHS Foundation Trust. In this role, she undertakes regional leadership to support the implementation of national and local transformation projects ensuring the mainstreaming of genomics in midwifery activity, working alongside the other six NHS GMS Alliances. In this role, she brings together providers, multi-disciplinary teams and diverse communities to work in partnership across geographies aligned to the NHS Genomic Laboratory Hub (GLH), raising awareness of research and ensuring equitable access to genomic testing pathways. Tina also works as a Senior Clinical Research Midwife at Imperial College London, within the Women’s Health Research Centre and Imperial College NHS Trust. Working together with genetic counselling and fetal medicine colleagues, this research in prenatal diagnostic studies has included non-invasive prenatal testing and whole exome sequencing in pregnancy. Currently she is also a co-applicant for a NIHR national study evaluating complex interventions in the maternity setting, developing from an interest in ‘burnout’ of midwives and exploring new ways of working in the labour ward setting. Tina also has a special interest in how genomics and other omics technologies may improve the detection, diagnosis and treatment of complications in pregnancy. She is also part of Tommy’s Baby Charity team providing expert midwife-led advice, pioneering research and evidence-based information for parents.

Denise Barnes

Denise is the lead midwife for genomics in North East & Yorkshire Genomic Medicine Service Alliance (GMSA.) Working as the midwifery lead on perinatal transformation projects, she understands the challenges of embedding genomics into maternity care. With experience working closely within a multi-disciplinary team in fetal medicine this has driven her to explore how to improve access for women and their families to the informed offer of support and testing from perinatal genomics services. With a specialist interest and clinical experience in fetal and maternal medicine, she is committed to increasing awareness of genomics in the maternity care pathway and improving access to genomics for women and their families.

As the midwifery lead on regional transformation projects she developed a broader insight to the current access to perinatal genomics services. Collaborating with colleagues to explore current access to genomic services and using data and pathway mapping to evidence this allowed for the development of resources and interventions to improve access and reduce potential inequities. She is proud to have participated in 3 patient videos designed to offer more personalised information for families considering prenatal invasive testing.

Denise utilised some of the findings from the transformation projects to increase awareness of genomics in local pregnancy loss care pathways, reducing gaps in staff knowledge and offering a more consistent approach to the offer of testing.

She has completed a PGC in genomics which includes the design and implementation of a service improvement project to improve communication between families and the health care providers when genomics become relevant in a pregnancy. In the form of a perinatal genomics (peri-gen) passport, this handheld record puts the woman at the heart of the information and the care pathway, documenting what matters to them during this time as well as a summary of the lead health care providers and genomics investigations offered/performed.

Denise is currently supporting the Generation study team to reach across North East and Yorkshire and work with the local teams to understand the feasibility of whole genome sequencing and newborn screening; collaborating with other GMSA’s on the prenatal network of excellence work; and leading on a regional project to support Trusts to embed testing for monogenic diabetes in their gestational diabetes pathway. Outside of work commitments she enjoys running with her dog and spending time with family and friends.

Emma Tomlinson

Emma has been a qualified Midwife for 12 years, prior to this she worked as a Nurse in Manchester. In her current role, Emma is the Specialist Rainbow Clinic Midwife at St Mary’s hospital in Manchester. She provides care to families before and during their pregnancy after loss. Emma is also qualified in third trimester ultrasound scanning and scans weekly in the Rainbow Clinic in Manchester. Emma has supported the roll out of the Rainbow Clinic model of care and has successfully supported the setup of 30 other UK Rainbow Clinics and 3 in the USA. Emma is the lead Midwife and co-investigator on the Tommy’s National Rainbow Clinic Study – to date, the largest global stillbirth study exploring the pregnancy, labour, postnatal experiences and outcomes of women attending the Rainbow Clinic. This study will enable us to gain a better understanding of the care required in a pregnancy following stillbirth and neonatal death in order to achieve a positive pregnancy outcome. Emma is passionate about reducing health inequalities and ensuring fair and equitable access to all families during pregnancy after loss.

Emma also works as a Research Midwife at St Mary’s hospital in Manchester. In this role, she has had experience of working with NHS England on patient outcomes following PlGF blood testing, collaborating on a national twins study and looking at the support needs for parents in pregnancy after perinatal death. Emma is also a Tommy’s Midwife working on the Pregnancy helpline. In this role, she provides advice, reassurance and support to families before during and after pregnancy or at any point during a pregnancy loss.

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Hosted by: Maternity and Midwifery Forum

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Supported by: MATFLIX

Filmed by: Narrowcast Media Group

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