By Sarah York
When an Infant Dies
Once in a while, I encounter people who teach me about spiritual power in ways that surprise and humble me. Michael Comando and Nanette True were two such people.
Michael and Nanette had just given birth to their first child, Avery – a baby so severely handicapped by a genetic defect that he was entirely dependent on machines to keep him alive. They had already made the choice to try to save his life, in spite of the knowledge that even if he lived, he would continue to be severely handicapped physically and mentally, requiring an incredible commitment from them. The nature of the infant’s problems was such that medical personnel were not obligated by law to take lifesaving measures. Avery’s parents, however, never had to think about it. They beheld a precious human being, their first child. Because they were able to love their child so totally and unconditionally, others, including me, were drawn into their circle of hope and could see what they were able to see.
Avery’s little body failed to respond to the surgeries and treatments offered, and he died seven months after he was born. He was not just a handicapped infant who never had a chance, however; he was a person who had spent some time in this world, and his parents needed to hold a service to remember him well.
My remarks were specific to this family’s context but could be adapted for any occasion of infant death. I offered a greeting and then said:
On this autumn morn, we meet in space that is made sacred with the spirit of love and memory. For we have gathered here today to give testimony to the power of the brief life that Avery had on this earth. We gather also to mourn Avery’s death, to say goodbye to him, and to commit his spirit to eternal peace.
We gather first to remember Avery – to remember him in his helplessness and pain, yes – but to remember him also in his moments of infant delight: to recall his first smile and his growing response to the people around him.
We gather also to mourn – to mourn for the loss of love growing into tomorrow, deepening and maturing through joy and conflict; to mourn the empty spaces in a home that has been prepared so that he might take his place among family; to mourn for the opportunities Avery will not have to smell a flower, to walk in the snow, to play at the shore.
Our tears of sadness for the loss of this new life cut short before it could blossom forth in fullness mingle with tears of sadness for the loss of hopes not realized.
With the sadness of loss, we come also in gratitude, thankful for the gifts of love and humanity that Avery gave to all who were touched by his valiant struggle; thankful for the difference he has made in the lives of so many who invested their skills and their hearts in the effort to keep him with us; thankful for the power of love that issued from his very being.
Thus, with tears of memory, of loss, and of gratitude, we are here to grow through an ending into a beginning – to let go of Avery and, with memories and treasures gathered up for the journey, gain strength for moving through the days ahead.
After a reading from “The Little Prince” chosen by the parents, I said:
“All of us must lose our hearts to a child…”
I spoke with Michael and Nanette shortly after Avery was born, and it was clear to me then that they had already lost their hearts to this child who, though he had to depend on machines for his breath and life, was born with stardust in his hair, a holy and precious gift. He was their little prince, and no degree of physical brokenness diminished the devotion they poured out for him.
The story of Avery’s short life is a story of love, a story of courage, a story of faith, a story of hope.
He knew more pain in his little body than most of us experience in an ordinary lifetime. It took most of his energy just to stay alive. Yet he could respond to the loving eyes of his mother and father or the caring touches received from his army of hospital attendants with a smile, a gurgle, or his own silent laughter. He could also let out a good angry belt when he’d had enough of being a pin cushion. As Nanette and Michael and other family and friends loved Avery into this world, he responded with remarkable strength and courage.
Avery’s story is also a story of human possibility. Undaunted by the sterile barriers of hospital procedures, Nanette and Michael nurtured Avery, giving him what no surgery, tube or injection could provide. To them, and to the others who worked so hard to keep him alive, Avery was not just a helpless, handicapped infant – he was a human being. They saw past the helpless patient to the boy.
So there were many who got acquainted with this little prince, who lost their hearts to him, who will remember him not only for who he was but for what he gave to them.
During the prayer, I offered these words:
Daily we are touched by the rhythms of life and death, yet now we are out of rhythm, for birth and death have seized too closely on the same moment. In sadness for the hopes that are not realized for Avery, we seek peace and hope.
Disappointed that the fight for life has ended in death, we rest in the relief and assurance that Avery is liberated from pain and suffering.
Death Before Birth
When a fetus is miscarried, aborted or born dead, hospital personnel call this a “fetal demise.” They know also that for whatever period of time, and with whatever circumstances of loss, a mother carried a child in her womb. Whether her pregnancy was for two months or nine, she lived in relationship with that child as well as with the father or others who participated in the hopes, plans and decisions that were made for the life growing within her.
Health professionals are generally sensitive to the need for parents and family to express their grief. At some local hospitals, they encourage parents to hold a dead infant, and they take photographs of the body. The film is given to the parents, who choose whether or not to develop it. The parents receive a card with a stamp of the footprints and a keepsake box that contains a gown and cap and blanket. If a fetus has developed for fewer than twenty weeks, the hospital will cremate the body and give the parents the remains or release the fetus for private burial. (If the fetus has developed twenty weeks or more, the body is released according to the same laws that apply to other deaths.)
The footprints and the keepsake box can then be used for the ritual of committing the bodily remains. This was the case for the parents of a boy child who was developing with no brain; his life ended with a medically indicated abortion. On a table prepared for the ceremony, they laid the infant’s ink footprints, a small carved box containing the infant’s fetal remains, and a large blue candle. The candle was not lit, and it remained unlit for the short memorial. The unlit candle, a palpable symbol of a life never lived, offered a space for grief – an empty space bereft of the hopes for new life.
Some General Guidelines for Infant or Fetal Death
Drawing from the illustrations in this chapter, there are some things to consider when you are planning ceremonies of memory for babies who die before or shortly after birth.
• Whether or not the child has breathed or been given a name, he or she lived. The child miraculously developed uniqueness and existed in relationship as a human being, not an “it.”
• The death of an infant or fetus is often the death of the hopes and dreams of the parent or parents. These hopes and dreams should be named.
• The physical remains, even of a fetus that has been aborted by choice, deserve a ceremony of committal. This honors not only the human life that developed in the mother’s womb but also the relationship that existed between parent or parents and fetus. A ceremony will help bring closure to that relationship.
• To gather in community for a ceremony of memory and committal not only honors the brief life of the child but also gives social recognition to the depth of the loss of the parents. It is an invitation to others to recognize the family’s grief and offer comfort.
• How to Be Supportive After a Miscarriage
• What Helps When We’re Experiencing the Unthinkable
Also by Sarah York:
• Planning a Memorial Service after a Suicide
• When a Teenager Dies
Sarah York is an author and Unitarian Universalist minister. Her book Remembering Well: Rituals for Celebrating Life and Mourning Death, now available in a new paperback edition, speaks to people who do not want a religious or spiritual context for ritual as well as those who do. The book received outstanding reviews from numerous publications, including Publishers Weekly, USA Today, The Washington Post, and the American Journal of Hospice and Palliative Care. Ms. York is semi-retired and is available as a keynote speaker and workshop presenter on topics related to her books.
Image Source: StockXchng/mmagallan
Your story of Avery simply fills my eyes with tears. Our family lost our daughter at nine days old. She too was born into this world with suffering. My fondest memory is her squeezing my finger and her eyes opening with a smile at the sound of my voice. He life was brief but her presence is forever.
Loving through loss -- Miranda
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