Bereavement

broken heart by starry_eyedkidI want to write tonight about a very little discussed risk of PAMS. Bereavement. There are risks of bereavement for donors and recipients. I have made the decision to donate to terminally ill babies, and to babies who’s prognosis was uncertain due to cancer and congenital conditions. I have donated to babies with mothers undergoing chemo and radiation for cancer. I have held space and provided support for recently bereaved parents considering donation through PAMS networks and milk banks. I have born witness to the pain of parents who have lost their babies, but wanted to reach out and thank their donors.

I also want to talk about the benefits of PAMS when it comes to bereavement. For many families, knowing that their wishes for donor milk for their child were honored by the gifts of donors eased the pain of passing. Many families express the comfort their children receive from human milk sustaining tiny besieged bodies. Donors, including myself, describe the humble gratitude of being able to provide some measure of comfort to families facing such difficulty.

I cannot pretend to be any kind of expert on grief or processing loss. Everything that will be discussed was a process of discovery, with an overpowering sense of inadequacy.

My first encounter with bereavement came in 2011. I was contact by a mother who’s 24 week premie had just passed. She had been pumping round the clock for the 3 and a half weeks she got to spend loving her baby earth side. She had a small stash of milk that represented for her the hope and commitment to sustaining this life, no matter the adversity. She believed there was powerful spiritual value in that milk. She was slowly weaning herself from the pump, and wanted to donate her milk. She had been contacted several times by her local milk bank to donate, but said that the contact made her feel like a commodity. Thank chaos this contact came through email, so I had some time to think through a response. That response eventually laid out the situation as follows:

Consider the degree of separation. When donating privately to families, there is inevitable contact with the recipient infant. This may be an opportunity to watch your gift and intention for your infant sustain a child you will be able to watch grow, and build a relationship with. This may prove to be difficult situation, as it is natural to feel resentment that you do not have your own child to sustain. If being close to a child receiving your milk feels like a burden, donation through the milk bank will honor your dedication and sacrifice, and provide you the distance to grieve and frame the donation in a way that supports coping and healing.

Consider the family. The recipient family may not be comfortable allowing you, as a donor, to have intimate knowledge of or access to the recipient infant. If this would create feelings of betrayal or burden for you, this may not be an acceptable choice. Also consider your own family. If there are relatives or children who are going to ask about the continued pumping, or the decision to donate, will this be a supportive interaction? Will this lead to reliving the loss in a way that deepens your emotional burden, rather than uplifting you? Are you prepared to discuss your decision? Do you have someone to run interference for you with this line of questioning?

Determine your limitations. Be sure to sit with a few possible outcomes. Donation to a milk bank can be stopped at any time, and requests for further contact to cease honored. This may not be the case with private arrangement. Are you open to the idea of discussing continued pumping with a recipient family? Do you intend to make a single, large, one time donation and make clear the absolute nature of this exchange? Feel confident that your decision to stop donation at any time is acceptable, and will be supported by the PAMS networks and/or the milk bank.

Know your support options. It would be remiss not to encourage seeking support. Hospital staff should have a list of local resources on hand to support the grieving process. I did a little research in the donors area and provided a few options for support, in case the relationship with the medical team was not one of comfort seeking this information.

This donor corresponded with me a few times, and ultimately decided that she would donate by private arrangement. I never heard how that went. Since that first encounter, I have supported 14 other families through the loss of infants and of parents. The process does not get easier. I still remember every name, and some days they flit through my mind unbidden, calling me back to their stories. It is not an easy thing. Some days, it doesn’t feel like a fulfilling thing, either.

There was no one to give me perspective and things to consider as a donor when I chose to donate to children who may leave this world far too soon.

I can remember with absolute clarity the call to let me know that my first recipient baby had passed. We cried together on the phone for quite some time. It was exceptionally difficult to accept the praise and thanks of the family for “all I had done”. All I did was give milk, hugs, words of admiration, and hope. A baby just died. How is it possible that these things, these things that felt so terribly inadequate to me, had made such an impact on them that in their grief they felt the need to reach out to me – and give thanks? The second recipient baby I lost contact with after he went into remission. His family was not able to find me, or perhaps had not been inclined to, until he lost his second battle with leukemia. He was 2 when I started to donate to him, and 3 when he went into remission. He passed at the tender age of 4 and a half. In his pain, he asked for the “sweet milk” as he called my donation. This time I didn’t know. His family didn’t know I had give birth again, and was lactating again. His family could not find a donor where they had been stationed this time. If I had known this sweet boy was in need I would have moved mountains to get him some “sweet milk”. Part of me died inside knowing this little boy died without even this small comfort. My third recipient baby that passed had a serious congenital heart condition, and it was a very long shot that surgery would save her. It did not. I still visit her headstone from time to time.

There was no one to give me perspective when I chose to donate to a family facing the possible loss of their mother and wife. She had been dedicated to exclusive breastfeeding for 6 months, and found a lump in her breast at 4.5 months that she thought was a plugged duct. It was cancer. I donated to her son until he was 11 months old. His mother told me that knowing he was sustained on the love of humanity gave her the resolve to accept her treatment, and the very different relationship she had with her son now. She left behind a determined and challenging boy, and a husband who loves her truly and deeply, who chooses to celebrate her life and dedication to their family to instill the best of her in his young son.

If I were consulted by prospective donors for families at risk of losing a recipient parent or infant, it would look something like this:

This is more than a milk exchange. You will give this liquid gold, and it will have deeply intimate meaning for the recipient family. Are you prepared in a time of grief to receive gratitude? You may face a situation where you feel obligated to provide milk, even at the expense of your best interest. Are you willing to accept the burden, or do you need to set boundaries with the family to preempt this situation? Do you feel that you can accept the long term impacts of loss? Honor yourself with honesty in answering these questions. Commitment to these arrangements will have deep, permanent, and unforeseen consequences, for better or worse. If a connection of this potential depth is not something that you can accept, you need to find another recipient family. It is OK to decide that this arrangement is not in your comfort zone. It is healthy to make the decision not to take on a potential burden that may alter the way you feel about lactating and breastfeeding.

As deep as my grief for these families runs, I would not have made a different decision. I also have a much deeper appreciation and passion for informed consent and choice for donors and recipients to protect themselves as best they can. Coping with the knowledge of loss has not been graceful for me. It has brought me, literally, to my knees. I have sobbed uncontrollably over my thriving daughters. I have begged the universe for absolution of my guilt in not being able to do more. I have raged at myself for failing to accept my own limitations, and to have the grace to accept with humility the thanks of families.

Perhaps this unusually personal and decidedly un-academic musing will inform the consent of future donors and recipients in a deeper way than PAMS currently provides.