‘It gave me a sense of purpose when I should’ve had my baby’

8 Mins read

“I didn’t know through any of my labour that there were any issues,” says 31-year-old Amy Younger. However, as soon as her daughter Lucie-Mae was born, they knew something was wrong.

“They tried to resuscitate her and that obviously didn’t work because she was already gone at that point,” Amy says. Before leaving the hospital, Amy, her partner Alistair and their son Max spent time with Lucie-Mae in the bereavement room at Sunderland’s Royal Hospital.

According to the Office of National Statistics, Lucie-Mae was one of 2,323 infants who passed away in England and Wales in 2021. The shock that followed, knowing their daughter would never laugh or cry in their home, continues to affect them as they try to find comfort by including her in their daily life. “I’ve got a teddy bear that my partner and I sleep with and a memory corner for her and it’s things like that makes her a part of our family,” Amy tells us. 

The new reality bereaved parents face after losing their child is undeniably filled with grief and unanswered questions. Not only are they met with joyous parents leaving the hospital with their new family member, they also have to navigate the way in which pregnancy changed their bodies.

Larger breasts, weakened core muscles, weight gain and stretch marks are all common changes to occur during and after pregnancy. An aspect some mums do not consider after infant loss, however, is that their milk will come in after a few days. Therefore, as Lucie-Mae was born at 37 weeks and four days, Amy was left with a decision: To donate her milk or stop lactation. 

Breast milk is highly encouraged over formula because of its many benefits for both parent and child, including vitamins and minerals newborns need. Despite this, there is a lack of awareness surrounding breastfeeding in the UK.

“I didn’t know it was a thing. I knew people who had babies could donate milk but I didn’t know people who had babies who had passed away could also donate,” Amy says. It was her bereavement midwife who brought up the option of milk donation and said that from the second she asked she knew from Amy’s face that it was something she wanted to do.

She said yes straight away. “It was just something I had to do for myself. I felt like I was doing something for somebody and it was gonna help us either in the short-term or the long term which incidentally has helped both. It really helped my grief process and it gave us a little bit of a purpose when I should’ve had a baby,” she says. With that, Amy became the first person to donate after the loss of a baby in Sunderland. 

Like anyone wanting to donate their milk, she expressed (pumped) her milk with the purpose of donating it to a milk bank. There, it is processed before being given to babies at neonatal intensive care units.

There are 17 milk banks in total across the UK. Each of them is a member of the United Kingdom Association for Milk Banking (UKAMB), a charity focused on ensuring that every child has access to donor milk.

Amanda Wood, milk bank manager at Oxford Human Milk Bank says some mothers want to make use of their oversupply while others because their own baby benefitted from receiving milk and want to pay back either later or with a subsequent baby.

Ruth Grit, 44, and mother of Matthew, 5, and Benjamin, 13 months, donated breast milk in memory of her middle child Daniel who was born at 20 weeks in 2019. Before having her first child she was unaware people could donate their milk.

“I didn’t even know milk donation existed until I had Matthew,” she says. Within an hour of Matthew’s birth he went into NICU and the midwives asked whether he could have donor milk, to which her response was: ‘‘Yes but I don’t really know what it is!”

Two years later, when Ruth and her husband Richard lost Daniel, they were not warned that there would be an increased amount of milk production. “There was no preparation for what that could feel like,” she says.

At that point, as Ruth was still breastfeeding Matthew he took what should have been Daniel’s milk, and she remembers how that impacted her body. “Feeding after loss is not really talked about and it’s incredibly tough because your body is screaming out that you should be feeding a newborn baby cause that’s effectively what your body has been through and it was horrible,” she says. 

Ruth also explains that as they experienced a second trimester loss, they did not know where to go for support. “You don’t seem to fall under miscarriage support but you also don’t seem to fall under stillborn support so that was quite strange because we didn’t really know where to go.”

Soon after their devastating loss the world plunged into a life in lockdown and as both are frontline workers they “didn’t have the time to process what had happened. It was strange because you are going through this personal grief and then you’re thrown into the world’s going mad and myself and my husband both being front line we weren’t given the time or the space,” she says. 

Two parents at a child's funeral. On the left sits a white teddy bear. On the right side stands to parents, the father in a black suit reaches his left arm towards the teddy while the mother (wearing a pink long sleeve) holds tightly on the man's left arm.
2,323 infants passed away in England and Wales in 2021 [Unsplash: The Good Funeral Guide]

The fact that the UK has one of the lowest breastfeeding rates in the world, with eight out of ten women stopping breastfeeding before they want to might indicate why there is a lack of conversation surrounding lactation after loss and breast milk donation. The donated milk is safe for babies, after the donor is tested for infectious diseases and the milk is pasteurised. 

“The culture in this country doesn’t support breastfeeding. Formula company’s also exploit loopholes in the WHO organisation marketing code to advertise their products to such a level that it is seen as the norm,” Amanda says.

Concerns have been raised about the lack of early education and support for new mothers, many of whom are discharged very early before feeding is established, and so receive very little ongoing support. Family influence and peer pressure also play a role.

Ruth’s real interest in donating was sparked after the birth of her youngest, Benjamin, who was in need of donor milk. However, the midwives informed her there was no more milk left at the hospital, which meant that when she had the opportunity to donate, she knew she had to do it.

A while later, Milk Bank at Chester (the largest NHS milk bank) posted about donating after loss and she found herself wishing she had known about it earlier. However, as Ruth shared her journey on social media they rang her asking whether she would like her donation to be in Daniel’s memory. Since then, she has donated 10 litres (17.6 pints) of milk in memory of their daughter.

“I’ll never understand what’s happened, but it’s given me something positive to come out of it. “I think donating the milk and being able to talk about the fact that it’s in Daniel’s memory has allowed me to talk about Daniel in a positive way that doesn’t make people feel awkward because, in a sense, they’re more interested in the milk donation side of things. It gives them a chance to kind of ask questions without it being about the baby,” she says. 

There is no denying that the lack of awareness of both lactation and donation after loss poses challenges to mums around the UK. In Amy’s case, the issue she faced was lack of awareness amongst the hospital staff.

“My bereavement midwife was so supportive,” she says before saying other medical staff were worried it would negatively impact her grief. Impact their grief it did, but not in the way her community midwife said: “If I hadn’t done that I would’ve turned to drink or something like that to mask it,” Amy says. 

This trend is changing however, Amy has gone on to train at the Sunderland Royal Hospital, and she will keenly encourage people to donate milk because of how much it helped her. “Since I’ve started doing training with them, there have been a lot more people who’ve opted to do it in Sunderland.”

Another change took place in 2021, when The Milk Bank at Chester launched The Memory Milk Gift Initiative, a project working to improve services offered to bereaved families donating and aims to celebrate the strength, courage and generosity of those families. 

“We believe that every bereaved family across the UK should be given the choice to donate milk in memory of their baby, however this is only one of a number of choices you can make about your breast care,” they write on their website. Both Amy and Ruth donated through the Memory Milk Gift Initiative to which Amy has to say “The milk bank at Chester is so supportive. They don’t pressure you, if you wanna stop they’re there to talk to you and tell you how to stop. They’re not pushy or anything like that and they’re just lovely,” she says. 

As both mums navigate life without their child, the physical and mental impact that milk donation has had on them is immense. “It made me feel like there was a purpose because when you lose your baby you think that the world’s ended, and it has but it gives you a little glimmer that you help somebody else and it gives you a little bit of a smile at the end of it when you’re in bed pumping your milk you just think,” Amy says.

Today, she advocates with 4Louis (a charity supporting families through child loss) to raise awareness and ensure everyone is given the option to donate. “I know people who haven’t been given that option and I’ve just happened to say that I donated my breastmilk and they’re like ‘I wish I knew about it because it really would’ve’ helped us and I know it would’ve.”

With that said, as she bounces 16 week-old Matthew on her lap, she makes it clear that it impacts the whole family. As she pumps like she would have, had she had the opportunity to bring Lucie-Mae home, she highlights the importance of support from one’s family.

“They fully supported it straight away, I think they knew just from the way I said it that it was something that no matter what they said I was gonna do so the best way for them to support me through grief was to support my decision to do that. I think they’re quite proud.”

At the end of our conversation, Ruth says: “Your journey is yours and nobody will have gone through the same journey, a lot of people have had similar journeys. Be open about it to the extent that you’re comfortable with and acknowledge that it is quite tricky because people will share their story so be prepared for that.”

It is important to acknowledge that milk donation is not what might be best for every person. But both Ruth and Amy stand together and say that families should be given the to be able to make that choice themselves.

As Amy says: “It’s something that should be offered to every person. I know it’s hard for a midwife to go in and say ‘you’ve lost your baby do you want to donate your milk’, but they can say ‘you’ve lost your granddad do you want to donate his liver’ so why is it difficult? It can help somebody a lot.”

Featured image by Bia Octavia via Unsplash CC.