The 24th of August 2017, was the day my world changed forever. At 41+2 we heard the words no parents ever want to hear. Our little boy had gone. Two days later Austin was born. Heartbroken doesn't quite cover it, in fact, it doesn't come close.

Throughout this horrific situation one overriding feeling was present, a lack of control. However, there was one thing I could control, what would happen to his milk. Like so many angel parents before me, I had the overwhelming urge to do-something, anything, to help others. So I refused the pill and began to pump.

Breastfeeding had been a huge part of mothering Austin's siblings and as a nurse and breastfeeding supporter I knew how important so called, 'miracle milk' was to babies in need. Leaders of my local breastfeeding support group were able to put me in touch with my nearest milk bank to begin the process. I learned that early milk is particularly important to the most vulnerable babies, those in special care, which meant that Austin's milk could be life saving.

I found real comfort in knowing Austin's milk could potentially save a life and spare another family this heartbreak. Looking back I also feel that having something practical to do, something that provided structure to my day was hugely important in those early days of grief. But I wont lie, it wasn't always easy, tears were often more forthcoming than the milk and after all this it turned out our milk couldn’t be used. Skilled support during this time was critical.

In the few short months since my experience I have helped support others in similar situations and began to explore the special experiences of milk donation among angel parents. I was lucky that owing to my past experience and being a member of a national breastfeeding support group I had excellent support. I was however, sad to learn that this is not true for everyone going through this unique situation. That really hit a nerve.

I began discussions with other bereaved families and the professionals working with them and several common themes emerged, they included;

Simply not being aware of milk donation as an option.

Mothers discussed being given medication to prohibit lactation without any explanation and even in some cases consent, and this reinforcing their feelings of loss of control.

Professionals discussed their difficulties with having conversations regarding donation at such an emotional time and felt by not doing, they were ‘protecting' their clients in some way from further pain and also that they lack any insight into the process.

The option not being discussed in a positive light, by family and professionals, (perhaps again in a protective manner). Professionals and friends/family not aware of how it can be a positive way of making and maintaining connection with baby, mothers report that ‘creating a legacy’ can be very helpful during the process of grieving.

Not knowing how to access information regarding milk donation/banking and accessing/loaning pumps.

Parents have discussed either not knowing where to access information or those who did previously, not being able to recall information at such an difficult time.

Mothers have talked about not knowing how to, or, not wanting to access usual breastfeeding support owing to unique nature of their situation and discuss a feeling of 'not fitting in'.

Pumping mothers describe lack of support relating specifically to exclusive pumping, feeling isolated during this time and discuss desperately wanting to seeking out others who have experienced similar for both practical and emotional support.

Mothers who were already pumping for babies in NICU/SCBU settings report support stopping when baby died and them not knowing how to manage either stopping pumping, or continuing to donate.

Mothers who do not wish to donate not having any information on how to manage milk coming in.

In response to this information, 'A Very Special Gift' has been created.

A Very Special Gift aims to increase awareness of donating ‘legacy milk’ & provide these special people the support they deserve. It plans to do this by creating a website that will bring together all the information families and professionals may need from the various different organisation involved, in order to streamline access to information. And importantly create a support group to bring together parents going through this unique experience; providing them with the essential information and crucially, the experience and emotional support of others.

Our first objective is to create our webpage and we would appreciate any donation whatever size to help us do this.

Also importantly if you could share us to spread the word We would be forever grateful.

To contact us or for more information please email averyspecialgift@outlook.com, see our Facebook page, A Very Special Gift or Twitter @legacymilkgift. If you have experience of milk donation after loss please join our closed Facebook group A Very Special Gift.

Thank you.