Mother of baby with fatal foetal anomaly: ‘We don’t want this to happen to anyone else’

Jazmine Sands is grateful for the occasional telephone call from Our Lady’s Children’s Hospital, Crumlin, checking up on how she is doing, more than eight months after her baby girl passed away.

Mother of baby with fatal foetal anomaly: ‘We don’t want this to happen to anyone else’

“They mean the world to us; they are such amazing people who showed us so much compassion at such a dark time…we will never forget how they gave our daughter comfort in her final hours and the support they continued to give to us,” she says.

Isabella died in Crumlin within days of her birth at University Hospital Kerry, where she was delivered by Caesarean section on May 23 last year.

A rare heart defect — hypoplastic left heart syndrome — had gone undiagnosed during pregnancy and while additional complications meant she could not have been saved, Jazmine believes the trauma of their own experience could have been softened had they known of Isabella’s condition in advance.

This belief is the motivation behind her now public campaign calling for all pregnant women to have access to a 20-week foetal anomaly scan so that appropriate care arrangements are in place for babies who need them.

It would also mean parents are better prepared for the challenges that lie ahead.

At the moment, foetal anomaly scans are available at just six of the 19 Irish maternity units, and even at that, they are not available to everyone.

In a recent appearance before an Oireachtas committee to discuss the new National Maternity Strategy (NMS), Professor of Obstetrics at UCC, Louise Kenny, said less than half of women attending Cork University Maternity Hospital can access the scan. Asked if it was a class issue, chair of the Institute of Obstetricians and Gynaecologists, Dr Peter Boylan, said it was.

“The poor are disadvantaged across the board and don’t have access to the same sort of ultrasound services outside of Dublin,” he said.

The three Dublin maternity hospitals routinely offer foetal anomaly scans.

The new NMS has as a priority equal access to standardised ultrasound services for all women to, inter alia, assess the foetus for ultrasound diagnosable anomalies as part of a planned Prenatal Foetal Diagnostic Service.

The new HSE National Women and Infants’ Health Programme (NWIHP), tasked with implementing this strategy, commits to improving access to ante-natal anomaly screening in all maternity units.

Jazmine, living in Killorglin, Co Kerry, takes heart from these commitments.

A friend of hers whose baby also had a heart defect knew in advance thanks to a detailed scan. It meant arrangements were put in place for the baby to be delivered in Dublin’s Coombe, with immediate transfer to Crumlin. The alert on the baby’s condition meant the appropriate care was in place and the baby is now “doing very well”, Jazmine says.

In the absence of any advance warning in their own case, Jazmine and her partner Kevin Sheehan had the trauma of learning of Isabella’s condition eight hours after she was born.

She was subsequently whisked to Crumlin by ambulance, Kevin following by car, while Jazmine was left behind, recovering from her C-section.

“She was moved on a Monday and I had to wait until Wednesday. I feel I lost crucial time with my daughter because this screening was not in place. We don’t want what happened to us to happen to anyone else, ” she says.

Jazmine set up a blog as part of her campaign and says she has received hundreds of emails from parents, some of whom are expecting a baby and were not even aware of foetal anomaly scans. This week she is celebrating a breakthrough in her campaign.

She received an email from Health Minister Simon Harris advising her that the newly-appointed NWIHP director, Kilian McGrane would be meeting with her.

She subsequently received an email from Mr McGrane saying he would “ welcome an opportunity to meet with you, at your earliest convenience and discuss the issues raised in your email to the minister”. Mr McGrane said both himself and NWIHP’s new clinical lead would make themselves available.

“I know there’s a long way to go but at least they’ve acknowledged that there is a problem,” Jazmine says.

“I really want to work with the HSE on this. I feel I am the voice for all parents who have suffered a similar journey of loss, and the parents who could go through this trauma if this vital scan is not put in place.”

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