New guidelines will save lives

Conor James Whelan would be celebrating his ninth birthday on May 14 had he not been stillborn in 2014 following an undiagnosed obstetric condition during pregnancy. His perpetual infancy, his mother Siobhán believes, is an indictment of inadequate screening and inequalities in care across Ireland.

Last Friday, January 27, saw screening for 'vasa previa' added to standardised mid-pregnancy Anomaly Scans, as part of a new set of updated national 'Clinical Practice Guidelines' in Obstetrics and Gynaecology.

Vasa previa occurs when unprotected umbilical vessels run through the amniotic membranes and pass over the cervix.

The obstetric condition was not considered during Conor’s initial attempted delivery on the afternoon of May 13, 2014. He subsequently died 17 hours later.

Launched by the National Women and Infants Health Programme (NWIHP), the new guidelines also cover areas as diverse as Post-Menopausal Bleeding, Stillbirth, Vaginal birth after caesarean (VBAC), Postpartum Haemorrhage (PPH), among others.

Guidelines 13 through to 15 follow extensive campaigning by Vasa Praevia Ireland, a group co-founded by baby Conor Whelan’s mum Siobhán, in the wake of her son’s tragic death.

The group had contributed extensively in feedback offered to the authors of the new guidelines, and Siobhán was among those invited to attend the launch event in Dublin.

Siobhán is most pleased that the new guidelines reflect the need for Placental Cord Insertion (PCI) to be documented at all foetal anatomy ultrasound examinations; and that marginal and velamentous cord insertion may have an association with foetal growth restriction, therefore a foetal growth scan is ‘recommended’ at 32 weeks.

Furthermore, in cases with risk factors for vasa previa... multiple pregnancies and pregnancies conceived with in vitro fertilisation (IVF), targeted screening with TAUS colour Doppler is recommended.

The guidelines also states that a Foetal Medicine opinion should be sought if vasa previa is ‘suspected’.

The change has the potential to save dozens of infant lives each year. Recent evidence indicates vasa previa is more prevalent than even first thought- 1:1250 to 1:1600- and higher again in IVF pregnancies.

The NWIHP says the guidelines offer “up-to-date, evidence-based, clinical recommendations” for care of women in maternity and gynaecology services, and promote a “standardised approach” to care nationally.

“The first suite of guidelines will be followed by over 30 updated Clinical Practice Guidelines during 2023 and 2024. Each new guideline will be joined by a summary document to support healthcare professionals, and a plain language summary, which explains the impact the guideline will have on women’s care.”

In a tweet posted shortly after the new set of guidelines were first published, Siobhán described the moment as ‘bittersweet’, but noted also: 'We can’t dwell on the past’.

“I’m still processing it all,” she told The Anglo-Celt this week, remarking that the work she has done with Vasa Previa Ireland has been “for Conor”, but also for “every child lost, injured and our uninjured survivors. They were always to at the heart of and to the forefront of our advocacy campaign.

“It's a battle for mind over heart, to suppress your feelings some days if only to concentrate on the overall achievement and the safety of mothers and babies in the future. We all rumiate on the ‘what ifs’. Some of our children are not here, and some are badly injured.”

It was, Siobhán explains, ultimately a case of getting “all the ducks lined up” before campaigning for change in guidelines for vasa previa recognition could begin in earnest.

“We couldn’t push for screening when we didn’t have anomaly scans available. So our first major obstacle was getting the anomaly scan rolled out nationally. In 2016, only four main maternity hospitals provided it fully, and three others on a partial basis. It’s now available in all 19 units including Cavan since late 2018. Only then could we push for screening to be included using best practice and research data. It's as comprehensive as we could have hoped for,” she says of the new set of guidelines.

Siobhán is quick to thank coroners in Cavan, Dublin and Kilkenny for their recommendations and endorsements at inquests carried out, and to the many clinicians who also supported the need for change though their research.

“All this evidence was so valuable in our advocacy campaign and in achieving our target goal of having VP screening implemented.”

Despite the sense of positivity, Siobhan and her fellow campaigners expect some “resistance” to the new guidelines being implemented but, overall, they believe the “benefits of screening and diagnosis with appropriate management” will eventually win out.

“On Friday, seeing the final piece of the jigsaw fall into place, that was an important moment for me. There will be teething problems no doubt as there always are with new guidelines. Some will be resistant to it but, hopefully, they will now see the absolute benefits of screening and diagnosis with appropriate management thereafter will save many precious little lives going forward and families from such preventable harms and lifelong trauma and to staff also.”