“Your child is not compatible with life.” These words, stark and clinical, represent the medical terminology used for those mums and dads to-be who are given a heart wrenching diagnosis at a 20-week scan.
Behind those seven words, lives can and do collapse. I know, because our team of nurses, midwives and counselling staff navigate the complex fall-out such a diagnosis brings on a daily basis.
On a practical level, parents have to make decisions – whether to induce a termination, whether to go ahead with a live birth knowing the terminal outcome where their baby may live for minutes, days or weeks. Or going through with a still birth. All are traumatic. In a general hospital, in a maternity unit, surrounded by healthy births and babies, it can be the loneliest place to be.
Despite the frequency of stillbirth, vulnerable women are often left to suffer in silence according to a report by The Lancet, in an ‘epidemic of grief’. Beyond the biological trauma, it is nothing short of an existential and sometimes spiritual crisis.
Marriages can be strained, fears take root around the very idea of future pregnancies or caring for other children. This acute trauma can echo down the years. There is no timetable for grief.
Fathers may feel they don’t have permission to grieve – to be strong for their partners. Not only do parents lose a child, they lose who they used to be; a future they thought they’d have.
At Forget Me Not Children’s Hospice, we developed a perinatal service that supports families across West Yorkshire to meet this very real need.
In West Yorkshire, the current figures around perinatal deaths (the period from a 20-week pregnancy scan through to the first 28 days of life) – are stark. In Bradford, deaths are 59 per cent higher than the rest of England.
Higher levels of deprivation and ethnicity are two major risk factors.
We stepped in to meet this crying need four years ago with a grant from Children in Need. We started with one person running the service, and it quickly escalated to a team of five, supported by the wider hospice staff. We now help over 100 families every year, and demand continues to significantly increase. The introduction of a bereavement midwife at Forget Me Not – the only one employed in a hospice in Europe – has strengthened the service, ensuring we can meet the very real challenges.
We provide one link for the family to ensure that everything they need can be met by a single point of contact, providing social, practical, psychological and spiritual support for them and other family members.
It costs £300,000 a year to support 100 families. To give that context, it costs around £3,000 per night for an acute bed in a hospital. And the babies we are supporting do have acute needs just like those in paediatric intensive care units. We are providing clinical care which would otherwise be delivered by the NHS. And we care for each family for as long as it takes, providing high quality bereavement support and counselling.
It’s hard to put a cost on what that saves society – loss of jobs, mental health needs, and family breakdown – are common consequences of baby loss.
The most difficult thing for me as CEO of Forget Me Not is equating money to an intense emotional experience. But it does come down to money.
With little NHS or government funding, the majority of our income is derived from donors, trusts, philanthropists and corporate support – we also generate funds through our own lottery and shops.
Money has been promised from the NHS for England’s children’s hospices – but not until 2023/24. This is why we are launching our Shooting Star Appeal on November 12. We hope to raise £1m to fund our service for the next three years.
We have forged a strategic partnership with the University of Huddersfield to fill the huge gap in research on the impact of perinatal loss and the steps we need to take to reduce it.
The fact our region has such higher than average perinatal death rates means the need is acute. Our priority is to protect the services we have now and grow them to meet demand.
We care for those who feel isolated and in despair, at probably the worst moments in their lives. Our job is to support those families when at their most vulnerable. Our nurses, midwives and counsellors need your backing to do their jobs and provide the best service families deserve. We need Yorkshire’s help.
Luen Thompson is chief executive of the Forget Me Not Children’s Hospice.