A study into the long-term consequences of the death of an infant on surviving siblings has recently been published. While the focus of the study involved infants who died in the neonatal intensive care unit (NICU), it seems the implications can also explain the affects of stillbirth, as well as the death of older babies, on living siblings. One of the most interesting findings shows that regardless of when the baby died – either before or after the surviving siblings were born – there was no change in how the living brothers and sisters dealt with the loss.

I have often wondered how Nicolas’ death will affect my living son, Christopher Nicolas, who was born three days shy of Nicolas’ first birthday in February 2007. My need to honor and celebrate Nicolas’ memory through displaying his photographs all over my home, lighting candles on important days, wearing special memorial jewelry – and simply speaking his name – has at times competed with my need to protect Christopher. My instinct tells me Christopher will be a better person for having known his brother, if only through my memories. But I worry that introducing the concept of death, and that death can happen suddenly and unexpectedly even to healthy infants and children, will be a lesson on the cruelty and unfairness of life – a lesson Christopher should not have to learn at such a young age.

I was relieved to read, at least according to this study, that creating rituals in celebration of the baby who died – sharing photographs and memorial keepsakes, participating in family traditions to honor birthdays and holidays – establishes a symbolic link between siblings and connects them in healthy ways. Surviving siblings who grow up celebrating the memory of their deceased baby brother or sister experience fewer negative consequences and feelings than those whose parents kept their grief for the baby private. Parents who try to shield their surviving children by never speaking of the baby who died ironically cause more trauma in the long term.

Death Of A Child In The Neonatal Intensive Care Unit: Long-term Consequences For Siblings
ScienceDaily (2009-04-06) — Little is known about the long-term effects of the death of a child in the neonatal intensive care unit on survivor siblings. These siblings may encounter unforeseen emotional difficulties and developmental consequences that can occur whether the siblings are born before or after the infant’s death. … > read full article

Every year around the world, more than 4.2 million babies die between 20 weeks of gestation and the first four weeks after birth. One million babies die from premature birth, while another 3.2 million are stillborn – the majority at the end of pregnancy during labor and birth. The remaining four million children who manage to survive pregnancy and labor end up dying during the first four weeks after birth. In 2006 my otherwise healthy son, Nicolas, was one of these statistics. Stillborn at 41 weeks during labor from undiagnosed velamentous cord insertion and possible vasa previa, preeclampsia and intrauterine growth restriction – all easily managed pregnancy conditions. The fact my healthy child lived and thrived for 41 weeks only to die during early labor still enrages me to this day.

Despite the magnitude of stillbirth and neonatal death, little attention is given to these most vulnerable of patients – not to the medical causes of their deaths or to the facts of their deaths and the devastation their loss brings to the families. The Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), based out of Seattle, Washington, is one of the few organizations working to raise awareness, find causes, and prevent these deaths. The sobering statistics above were taken from their website. Please visit their website for more information and spread the word about this wonderful organization: http://www.gappsseattle.org/.

Is a mother’s grief proportionate to the amount of time she was blessed to have with her child? Is her grief harder to bear when her child dies as an infant, leaving behind unfulfilled hopes and dreams of a life together, or as an adult who has built decades of memories?

Our world asks these questions of us, pits grieving mother against grieving mother, in a perverse competition of the mourning. For the first year after Nicolas’ full-term stillbirth, I felt I had to defend not only his existence as a human being but my right to mourn him as his mother. A friend of the family even had the audacity to say we were fortunate to lose Nicolas at birth rather than at five years old. I still have difficulty justifying this brilliant bit of logic. I suppose in her mind it is better Nicolas was robbed of the simple gifts of life – feeling the wind, tasting chocolate ice cream, laughing until his belly hurts, sneaking downstairs to see his Santa gifts under the tree on Christmas morning, feeling unconditional love in his parents’ hugs – than to have had these experiences for five years. In her mind it is better we lost Nicolas before his first breath than to have had the gift of watching our child flourish and live for five years.

The fact is each loss is unbearable – each loss brings a lonely anguish only the mother of a child who died can know, whether her child died at birth or at 45 years of age. I came across an article on mothers’ grief and would like to share. Through stories of mothers who have lost children at different ages from different causes, “An Uncommon Loss” describes a common grief among those of us living without our children.

“Uncommon Loss, Mothers Who Grieve The Death Of A Child”

In the months after Nicolas died, I scoured the Internet for information: medical information on the cause of his death, statistical information on how many babies die in this way, grief information on what to expect next, and support information on how to live without my son. I became intimate with a world I never knew existed, a world of mothers, fathers, grandparents and siblings struggling with the impossible loss of a child. I spent countless nights until four in the morning reading stories of women like me – women who couldn’t sleep, couldn’t eat, couldn’t do anything but read stories of women like them. I noticed a common theme: many mothers referred to their children as “angels,” especially when their children died as infants or toddlers. Whether Christian, Buddhist, Muslim, Jewish, Atheist or Agnostic, it didn’t seem to matter.

I resisted the temptation to give Nicolas this name. I imagined myself years from now, an old woman, no living children, no grandchildren, just a curio cabinet full of winged figurines supplicating in the most uncomfortable positions. It seemed too easy, too obvious, to call my infant son an angel. Yet, I was at a loss for what else to call him. I’m not talking about his given name; I am talking about a metaphor for my dead baby that softens the shocking sound of “my dead baby.” Something that helps me cope with his unfair and unimaginable death. “Angel” has become my cushion.

I now accept and even embrace my chosen metaphor for Nicolas. Nicolas was as close to perfection as is possible. When he was first born, I was absorbed with his silent, gentle presence. I felt the hush of the sacred in the delivery room. I hesitated to touch him for fear of disturbing his purity. Nicolas did not live long enough to keep me up all night with his colic, throw his Cheerios on the carpet, play his music too loud, or put a dent in my car the first time I let him drive it. He did not live long enough to secure his place amongst the fallen ranks of humanity like the rest of us. Nicolas slipped silently into this world from a place of perfection, lingered a moment, and then slipped silently back into the dark. For me, no other word but “angel” can describe Nicolas.

I don’t own a curio cabinet or a porcelain angel – not yet.

Every Spring I am reminded of my son, Nicolas. Not only because of his March birthday, but because this is the season of the cherry blossom and accompanying hanami festivals. In Japanese the word “hanami” translates to “flower viewing,” and the flower most often viewed is the cherry blossom. These delicate flowers flourish into clouds of pink and white blossoms for two short weeks and then quietly fall from the trees, petal by petal, like snow. For the Japanese, the cherry blossom symbolizes the transience of life – a brief, beautiful burst of color that ends almost as soon as it begins.

Nicolas spent his entire life in Japan, tucked inside my belly for a glorious 41 weeks. He died during early labor suddenly and unexpectedly from undiagnosed pregnancy complications. After his quiet birth, we held our beautiful son in our arms, close to our hearts. We took photos and locks of hair and footprints. We tried to give him a lifetime of love in two short hours and then, kiss by kiss, said our final goodbye. We took our sweet boy  home to the United States and laid him to rest just as the cherry blossoms were coming into full bloom.

It has been three years since Nicolas died, and it has taken me almost this long to understand the meaning of hanami and the reasons for hanami festivals. Many countries have their own version of hanami, where people gather to view the beautiful but short-lived cherry blossom, even in our nation’s capitol, Washington, DC. But only in Japan are there hanami festivals – a revelry of food, family and friends under the cherry blossom trees. Hanami is the celebration and appreciation of life, in spite of – or, perhaps, because of – its brevity. It is a party made all the sweeter by knowing it will end so soon.