Story by Margaret Pritchard Houston,
I was in hospital for 9 days before Isaac was born. I lost him at 27 weeks. By that point my milk had already started to leak so they gave my tablets to stop it. This was when I first came across Tommy’s when I was given their book on prematurity.
It was only after speaking to a school-friend that I found out about milk donation. She put me in touch with a friend in California who had experienced baby loss and we connected on Facebook. When I found out she was donating her milk to her local hospital’s neonatal ward I just thought, ‘What an incredible thing to do.’ I wished I had known about it before.
Four years later, in March 2019, I lost Ezra. I was under the care of one of Tommy’s clinics, Prematurity Surveillance at St. Thomas's, whose support and research were, and still are, invaluable to me. This time I was told that my breast-milk may not come in. When it did, I knew what to do. I refused the hospital tablets and asked the midwives about milk donation. They directed me to the bereavement midwife, who put me in touch with The Hearts Milk Bank. At no stage in the NHS was I offered this option. I had to advocate for it. Milk-suppressing tablets seemed to be the default unless your loss happens after 24 weeks; but I lost Ezra after 18 and can still fill 3 bottles a day with his milk.
Milk donation was my chance to save babies’ lives and bring something wonderful out of Ezra’s short life.
Bereavement support options
What struck me most was that I was given all the pain relief options in labour after baby loss. The midwives discussed them with me in an open and sensitive manner. I knew I was entitled to increased pain relief as there was no chance of damaging the baby anymore. Funerals, post-mortems, in all these instances, women after baby loss are given numerous options, offered with the utmost sensitivity by their attending midwives. So why not with milk donation?
I think this is something the NHS should seriously consider looking into. This is something which could thoughtfully change in bereavement support without a huge amount of structural adjustment. After delivery, when things have calmed down a little, you could offer a leaflet, clearly laying out the options following the same protocol as pain relief options, funerals and post-mortems.
No one’s choice but yours
For me, donating my milk, helps me to process my grief, it’s part of his legacy. It’s a connection I still have with Ezra. Saying goodbye to his body at his cremation was one of the hardest things I have ever done. Being able to come home, pump milk which is connected to him and donate that milk to give other babies life and health; it’s a powerful thing to do.
The process has also been healing for my relationship with my body. After two pre-term ruptures of membranes, I lost faith in my body; but now it is doing this incredible thing, it is giving life and it is doing it so well. I cannot say how much this has helped to change my perspective. My body is no longer a failure, it is a life-giver.
I know it’s different for everybody. I know it can be a barrier to moving on, to healing; but it can also be something incredibly positive and it is no one’s place to make that personal, intimate decision but yours.
Tommy's research and support were, and still are, invaluable to me.
I have always been the kind of person who processes things out loud. That’s why I decided to share my story, my journey and my experiences on Twitter. I could never have imagined the supportive and wonderful online community which has sprung from this decision.
Since I've been talking about this on Twitter many bereaved mothers in the UK have said they wished they had been aware of this option when they had their losses. Midwives I’ve talked to have said there is a hesitation to bring up this option, because of the fear of offending or upsetting bereaved mothers, or making things worse at a difficult time; but in my experience, instead of protecting my feelings it just felt like the choice was made for me about what to do with my own body, about how to process my grief, my loss.
Healing through giving
Once my bereavement midwife put me in touch with The Hearts Milk Bank, I immediately knew I was in good hands. They had a lactation consultant on staff who gave me wonderful pastoral support. She gave me advice about my oxytocin production. She made me feel like if I wanted to have a little cry every now and then, it’s OK to let it out. More than that, it’s completely natural.
Some people raise money and start charities in memory of their loss. This was my way of remembering Ezra. It doesn’t make it OK, but it does help. It gives me something to do, it gives me a purpose and a punctuation to my day. Milk donation was my chance to save babies’ lives and bring something wonderful out of Ezra’s short life; but the most important thing for me, it keeps me connected to him: we’re doing this together.