How donating breast milk helped me after the death of my baby

Trigger Warning: Baby Loss

“I’ll bring you the medication to stop your milk”.

I instantly refused.

In late October 2021, we journeyed into hospital during labour in blissful ignorance that our much-longed-for baby, our son, Rupert “Bertie” James, had just died. I’d felt him kicking and moving not long before. What was going to be the greatest day of my life, turned into the worst. Nothing made sense to us when we were told they couldn’t find his heartbeat. In some ways, it still doesn’t.

It also didn’t make sense taking the medication to dry up my milk. I was offered it as if it was a done deal. The initial reaction to my refusal was slight confusion. It seems it’s not the norm for bereaved mothers to donate, and I think that’s a shame. There are of course mothers who would understandably find lactating incredibly difficult and triggering after the loss of their baby. I see those women sharing their stories and asking for help drying up their supply as quickly as possible in the online groups.

Nothing made sense to us when we were told they couldn’t find his heartbeat. In some ways, it still doesn’t.

I’m known as a Snowdrop Donor

However, there are also the women like me (Snowdrop Donors), who the act of lactating and donating has been a light in the darkness of grief. It has been incredibly good for me physically and mentally. It was the right decision for my family. A decision I have felt more and more assured in for the last six months.

I wish more bereaved women knew about milk donation. Thankfully it was something I was already aware of, as no one mentioned it to me as an option in those early days. I did find it briefly mentioned in the SANDS booklet we were handed…on page 64…weeks later when I finally had the energy to concentrate on all the leaflets we’d been handed, by then it would have been too late.

While pregnant with Bertie, I knew if I was able I’d want to donate milk to the Hearts Milk Bank (HMB). A lovely woman in our hypnobirthing group had shared that she was again donating after the birth of her second child. I also knew my gran had donated milk in the 1960s, as she had a large supply, and was hoping it would run in the family.

Expressing milk gave us a purpose in life

As well as paying tribute to our son, expressing milk has helped us in other ways. There’s been especially tough times where we could have hidden under the duvet all day, but expressing milk has given structure and purpose to our lives – most notably in those first few weeks. It gave us reasons to hydrate, wash, fuel, and rest our bodies. I use the plural purposely too. My husband is very much a key part of ‘Team Bertie Bear’s Boob Juice’ [thank you my darling x].

I recall not long after Bertie died we drove down to the HMB to drop off some frozen milk, and collect more bottles. It felt like a special, meaningful mission we were undertaking…the freezer bag sat in his car seat behind us. My weekly donations have been a lifeline for us, and it had to be weekly as the freezer quickly filled…turns out I do take after granny (I always tell the SERV rider John to ‘bend with his knees’ when lifting the heavy bag of milk onto his bike!).

Expressing milk has given structure and purpose to our lives – most notably in those first few weeks

So how 300L and why so long, right?

I wasn’t sure how long I would donate for at first, but I knew it would be a couple of months at least. We knew we’d want to try and conceive a sibling for Bertie at some point, but we didn’t want to rush into it. As well as my physical and mental health, there were various tests and reports that would come up over the following months that needed addressing first (was Bertie’s death caused by a genetic issue, for example).

Before Christmas I settled on six months. It felt like a good amount of time, as well as having well-documented benefits for my body (lowered risk of various cancers, and osteoporosis for example). As I already mentioned, it was good for setting a purpose and schedule for us, but it can’t be understated how good it has been for my mental health too. I find the act relaxing. At times I’ve found myself reading the stories of families and their babies that donation has helped while pumping. I’m comforted in those moments.

I wasn’t sure how long I would donate for at first, but I knew it would be a couple of months at least.

Every single drop has been in honour of Bertie

Every single drop has been in honour of Bertie. Without him, I wouldn’t make the milk. It’s his milk; his gift to others. He had a huge impact on us. Through his milk donation he can have an amazing, positive impact on the lives of other babies and their families too. It helps us honour Rupert and his short life. For us, his precious gift needed sharing.

Initially, I was getting around 1.5L a day, which climbed to 1.7-1.8L a day once I got into a rhythm. I’d pump five times a day – when I woke up, lunchtime, mid-afternoon, early evening, and then around 11.30pm before bed. I get the greatest amounts in the mornings – at the peak it would be around 650-720ml. I donated the first 100L just after New Year. It was around February I reached 200L and I dared to dream I’d reach 300L by the end of April when I would start winding down. I didn’t quite get there by that date, but did a few days later after I’d started winding down my supply (slowly and carefully – I’m keen to avoid mastitis and the hormone crash!).

In some ways donating Bertie’s milk has meant we have straddled life and death. The grief of losing him, alongside the comfort of being able to help other babies. Maybe even save a life. Premature babies are at risk of Necrotizing enterocolitis (NEC). Human breast milk can help prevent this. Where mother’s own milk is not available, donor milk can step in.

I’ve also signed up to the Breastmilk Epigenetics Cohort Study (BECS) which I found out about through HMB. Knowing Bertie and I can help others in this way too is very comforting.

I’d pump five times a day – when I woke up, lunchtime, mid-afternoon, early evening, and then around 11.30pm before bed.

I’m part of a lovely milky sisterhood

I’ve received some lovely messages in the last few months. When I’ve put something onto Instagram (usually about a collection), HMB have shared it (I was asked if that was okay first) and I sometimes get a message from a woman who has seen it and been curious about the person donating, to then find me, a bereaved mother. Other bereaved mothers donate, but I don’t think most donate as long as I have (or publicise it on a weekly basis). Some messages are from women who have received donor milk after breast cancer stopped them producing their own; Some from women whose premature babies had donor milk; And some from other donors wanting to connect (it’s a lovely milky sisterhood we’ve all found ourselves in – donors and recipients). Thank you to them all for making me feel like an actual mother.

For Snowdrop Donors, the Milk Bank recognises the value and importance of honouring our babies. Some women will make a one-off donation, some donate for a week or so, and others continue for longer like I have. The overall amount is not important in a lot of ways, but rather the symbolism of the gift.

Lots of things contributed to my abundant supply

Something I’ve found with some of these messages are women who have struggled with their views of, and relationship with own supply, or feel guilty they have “only” donated a lesser amount. If I could reach through the screen and hug away the ‘mum guilt’ I would. I don’t want anyone to compare and find themselves wanting. I do enough of that for all of us! My baby died inside me. I felt strong and beautiful while pregnant. That completely changed. Being able to experience this aspect of motherhood, when so many other elements have been robbed from me, has helped me reframe the way I view my body.

Fact of the matter is I am in a different situation to others donating alongside feeding a baby. I have a genetic disposition to a large oversupply (I get much more than my baby would have needed), coupled with no Bertie taking his share. No baby at home also means I have a full night’s sleep, loads of time to sit and pump, and stuff my face and hydrate (I liken my current appetite to that of a teenage boy!…maybe more than one). Also, my equipment happened to work really well for me. I use Elvie (the company kindly donated some pumps to the HMB for Snowdrop Donors), and I knew I’d need the smaller nipple shields which make the process efficient and comfortable.

I definitely noticed a decrease in supply at times of stress (in the run-up to the funeral, the post-mortem results, HSIB meetings), but otherwise my grief didn’t seem to have an impact on my output – different sort of stress I guess.

Being able to experience this aspect of motherhood, when so many other elements have been robbed from me, has helped me

Every drop donated means a huge amount

Something I’d like anyone comparing to take away from this, is that every drop donated is incredible and meaningful. Literally! I’m not trying to be twee – I asked a friend (she works in a Special Care Baby Unit) how much milk a preemie actually has. Granted the amounts vary per child, but roughly for a baby under 30 weeks, they would get around 0.6ml every two hours. Yes 0.6ml! One of those 100ml donation bottles goes a really long way!

I want to take the opportunity here to thank the HMB team. They have made us feel so supported and taken care of. They know how important this journey is to us, but also, crucially, have never once made me feel pressured to continue – very much the opposite.

Thanks must also be heaped upon the volunteer bikers who are a vital cog in the whole process.

If you’ve read this and felt compelled to get involved in some way, please consider donating milk or money to the Human Milk Foundation (of which the HMB is a part of). Also consider donating, or volunteering for SERV. They’re also a vital cog zooming about the country delivering milk, blood, chemo and other life-saving things. All of them heroes.