A neonatal nurse and a hospice midwife, who run a project that supports bereaved mothers of newborns to donate breast milk in memory of their child, have spoken about the “snowballing” success of the scheme.
The Memory Milk Gift Initiative was set up in 2021 as part of the Milk Bank @ Chester, which is based at Chester at Countess of Chester Hospitals NHS Foundation Trust and supplies donor breast milk to neonatal units across England and Wales.
“We came across a lot of barriers. Healthcare professionals were pretty nervous about getting involved”
Laura Atherton
Laura Atherton, registered nurse and Chester milk bank bereavement lead, spearheaded the scheme, and Sara Balmforth, perinatal midwife at Forget Me Not Children’s Hospice in Huddersfield, has helped develop and spread it across other regions of the UK.
The initiative began after the milk bank helped one mother donate milk in memory of her baby after he was stillborn, Ms Atherton said.
“We realised that if we can help one mum, how many others could we potentially help by talking about breast care choices after loss,” she recalled.
What started as a scheme supporting this one family then snowballed, with 430 women in four years supported to donate breast milk in memory of their babies.
A memory milk “tree”, which commemorates all the donations, is, Ms Atherton said, “sadly and proudly” filling up at the Chester milk bank, and mothers who donate are given a hand-painted pebble bearing their baby’s name.
As well as this, the initiative sees Ms Atherton and Ms Balmforth running training sessions for workplaces on how to best support mothers and spreading the word about memory milk donations.
Ms Balmforth, who in 2017 became Europe’s first palliative care perinatal midwife, got involved with the memory milk scheme around six months after it began in 2021.
She said that, at the time, she had been supporting a pregnant mother referred to her who was asking about what could be done with her milk after her baby was born, given there was a life-limiting diagnosis.
“[The initiative] came about at the perfect time to start being able to provide much more support for these families,” Ms Balmforth said.
As a palliative care midwife, of which there are estimated to be fewer than five in the entire country, a significant part of her role is providing expectant mothers with options for memory making and having a “normal” pregnancy, despite a life-limiting diagnosis for their child.
To this end, she has set up bonding scans for families and other measures that help these mothers, who would otherwise spend much of their pregnancy only discussing their child’s condition, create memories.
Ms Balmforth, who typically supports a family from the 16-week mark, started incorporating discussions about donating milk after loss into conversations with her patients and into birth plans.
“We wanted families to know that they could store that milk and that there was a future purpose for it,” she said.
The initiative has also seen Ms Balmforth attend universities and workplaces to educate student and newly qualified midwives and nurses on milk donation after loss.
She added: “We find that by going in and speaking to [them], and having those relationships with the hospitals, that they don’t feel as anxious about having those conversations.
“But they also know that they can ring [us] up and ask us: ‘What do I need to say to this family? What do you suggest?’
“It just seems a much better system, because we never want a family to say they wished they had known about this [afterwards].”
“[Donation] helps regain some control when the bottom of the world has fallen out from under you”
Rowen Emmett-O’Toole
Rowen Emmett-O’Toole, mother of Milo, who died in August 2022 aged less than a month, donated milk to the Chester bank before her son passed away, and subsequently got involved in the Memory Milk Gift Initiative.
“It’s about regaining some of the locus of control,” Ms Emmett-O’Toole said, explaining why some mothers donate milk.
“As an expectant mother, you are in a nesting period. You’re expecting to bring a baby into the world and you’re body is preparing for everything to go right.
“[Donation] helps regain some control when the bottom of the world has fallen out from under you…”
Ms Emmett-O’Toole said that she was driven to help improve donation services after her own experiences.
She recalled, after receiving a diagnosis for Milo and proceeding to term, feeling “lost” and “alone”, and that she had to proactively seek out and research options for milk donation herself.
Ms Emmett-O’Toole, who is an operational service manager for a community NHS service, said her knowledge of the healthcare system was one of the only reasons she was able to find out about the options.
She regretted not knowing about the existence of schemes like the Memory Milk Gift Initiative, which allow mothers to continue donating after the death of a child.
She said that shared decision making and informed choices for mothers on continued milk expression after the death of a baby was “lacking”.
Following this experience, she got in touch with Ms Atherton, who said evidence from mothers like Ms Emmett-O’Toole had helped to improve the information given to parents.
Ms Atherton continued: “We came across a lot of barriers.
“Healthcare professionals were pretty nervous about getting involved, [they said]: ‘What if we make things worse?’… ‘How can you have this conversation with mums when their babies are critically ill?’
“There was lots of hesitation from healthcare professionals in neonatal and maternity, and we did a lot of work breaking down the barriers.”
Donation after loss, Ms Atherton said, was not a new concept before the initiative was set up, but it was not widespread.
Now, all 14 milk banks in the UK are signed up to the Memory Milk Gift Initiative, and Ms Atherton said the ambition was to continue to expand its reach among families and health workers.
She added: “Parents only know what we tell them… and healthcare professionals can only know what we know as well. That’s why we’ve gone kind of really big on trying to raise awareness of this.
“It’s not just offering [parents] the choice, it’s making sure that people knew about the choice as well. This very much is Milo’s legacy.”
The initiative, since its inception, has won awards and Ms Balmforth, Ms Atherton and Ms Emmett-O’Toole co-authored a scholarly article on milk donation for the Infant Journal.
