An appeal has been launched for babies diagnosed with a life-limiting condition before they are born. Catherine Scott reports.
Suzanne Ackroyd and Tom Burton-Chambers had been trying for a baby for more than two years when Suzanne eventually fell pregnant after a round of IVF.
“It was an amazing feeling,” recalls Suzanne. “We were eventually going to be parents.”
All went well until the 20-week scan when it was discovered there was a problem with the baby’s heart.
“The doctor said that our baby’s heart was formed abnormally. I remember sitting there just staring at the screen thinking, ‘this isn’t happening, not now after all this time’,” says Suzanne.
The couple got in touch with Forget Me Not children’s hospice in Huddersfield who have a dedicated perinatal service for families whose baby has been diagnosed with a life-limiting condition after their 20-week pregnancy scan.
Perinatal is the period from a 20-week pregnancy scan through to the first 28 days of life.
Forget Me Not Children’s Hospice provides practical and emotional support for families if a baby dies before, during or shortly after birth, or continues to live with a life-limiting condition.
The hospice has just launched its Shooting Star Appeal which aims to safeguard this important service.
“They have been amazing. Just being able to come to a place and talk things through with someone who understands and knows what to say to you,” says Tom.
“It feels like you are coming to a second home.”
Jacob was born on April 19 .
“He was doing amazingly – he was breathing on his own and we had a really good weekend and then we got the bad news,” recalls Suzanne.
Jacob’s condition was worse than expected and the couple was told he would need a high-risk heart operation and even then he might not survive.
“We had the tough decision to make on whether to go ahead with the operation or to bring Jacob home and enjoy him for the time we had with him,” says Suzanne. “When we had made our decision Forget Me Not did everything.”
With the support of Forget Me Not, the wheels were put in motion to allow Suzanne and Tom to take their baby home and spend a special few days with him making memories.
“We had 11 precious days with him at home which just wouldn’t have been possible without the perinatal team,” says Suzanne.
“I don’t think you realise how valuable it is to have the support there until you’ve been in a position where you need to draw on it. They played a key role in Jacob’s life,” adds Tom.
Twenty days after he was born Jacob died at home.
“Forget Me Not are like a safety net, and they catch you,” says Suzanne.
Forget Me Not was the first hospice in Europe to recruit a midwife. It pioneered its specialist services in response to West Yorkshire’s higher-than-average perinatal mortality rates.
Latest figures from researchers MBRRACE-UK into still births and neonatal mortality rates show West Yorkshire has significantly higher rates than the national average – Kirklees stands at 19 per cent higher than the national average for still births, with Bradford at 13.5 per cent higher.
Luen Thompson, CEO of Forget Me Not Children’s Hospice, said: “The need is acute. The fact our region has such higher than average death rates, should be a national outrage.”
This year, the hospice is delivering care to 650 children and family members.
“We need to raise £300,000 each year to support families from across West Yorkshire who need our perinatal services. We are launching our Shooting Star Appeal to ask for donations from the local community and to open the public’s eyes to a real issue affecting many families in the areas where they live.”
The impact of perinatal deaths and stillbirth has been described by a report in The Lancet as an ‘‘epidemic of grief’. It has been linked with post-traumatic stress disorder and can have a long-lasting impact on bereaved families and society at large.
Luen added: “The personal, social and emotional consequences of stillbirth are profound. The average cost to the NHS of care related to a stillbirth is £4,191. The cost of workplace absence as parents cope with the effects of grief was estimated at £8.1m annually in the UK.
“We are taking the strain off the NHS, as well as providing a lifeline to families. Beyond the physical trauma, baby loss is nothing short of an existential and sometimes spiritual crisis. We provide one point of contact and continuity of care for the whole family’s needs when and where they need it most.”
The hospice has forged a strategic partnership with the University of Huddersfield to fill the huge gap in research on the impact of perinatal care.
Vice-Chancellor Professor Bob Cryan, from the University of Huddersfield, said: “While there’s been wider research on stillbirth, more research needs to be done on the impact of perinatal deaths. Statistics show it is a bigger problem in West Yorkshire than anywhere else, and evidence of need will help Forget Me Not Children’s Hospice lobby for support.”
Services include clinical care as well bereavement support and counselling following a baby loss, not just for mums, but for the whole family too who are affected by this tragedy.