Remembering Tiny Feet

trigger warning

I still remember my first loss like it was yesterday.

She arrived to the unit in labor, uncomfortable but excited and obviously full term. She had waited a long time to meet this baby and today it was her turn to become a “Mom”.

Placing the monitors on her belly, it didn’t take long for the horror to unfold. It’s a moment every labor and delivery nurse prays she can somehow escape and a moment every mother doesn’t even want to consider to be in the realm of possibility. It’s the OB and the radiologist who make the final determination, but its the nurse, who has already looked into her eyes and regardless of the words she chooses to use, has offered her condolences before the confirmation is even made.

And hours later upon the culmination of her labor, it’ll be the nurse who holds her hand and helps her navigate the greatest horror she’s sure to ever endure. She delivered with me. And no amount of training could prepare me for the expected but absolutely gut-wrenching silence that would occur with his birth. The silence that would make this horrible nightmare come to fruition for his mother and her wails would replace his cries.

He was perfect … absolutely beautiful … his little lips hung like a bow …. and he reminded me of my own infant son when he was sleeping.

Maintaining my composure I handed her her baby and stood with her as she tried to process her nightmare. I marveled at his perfect condition. And when she questioned why he had a blueish hue and why his skin was so delicate, I put on my nursing hat and explained the lack of activity of the heart and the amniotic fluid that he spent his entire life in. I did a good job providing her the care and support that she needed. I didn’t cry. I was clear with the information I provided but I was compassionate. I set up a bath right on her bed and together we bathed her baby boy. Then I helped her dress his limp body in the outfit that she had packed to take him home in. I wiped her tears while I managed her bleeding. I rubbed her back while I monitored her vital signs. It was all just like I had been trained to do.

I was “just doing my job”…. but “my job” was really hard that day. Outwardly, I was just another labor and delivery nurse. Inwardly, I was dying and I just wanted to go home and cry.

A coworker must have noticed my internal struggle when I finally exited the room to begin filling out the dreaded mound of paperwork waiting for me. She came to me and said “Amanda, how are YOU?” And I all I could say was …. “His mouth … it looks just like my son’s when he sleeps.” And I swallowed hard and diverted my eyes.

“This isn’t your loss.”, she said.  She could see my pain as a mother. She could see that every time I looked at that baby boy, I saw my own. She knew the weight of the assignment as a nurse. She knew the sorrow I felt as a mother and the guilt that I felt as a human being because I was able to take my healthy baby home. Despite doing everything “right”, this patient would leave our unit empty-handed and that just wasn’t fair. She knew that. And she knew the challenge that it was for a new nurse to confront death … from every horrendously, inevitable aspect. And she guided me and mentored me and she helped me to become the nurse that I am today.

From that day on, it became my goal to become more comfortable with these situations, to not feel so overwhelmed the next time I was faced with a similar outcome. I wanted to be able to navigate these experiences without being consumed by my own grief. I wanted to provide excellent medical care, know the paperwork and at the same time, not sacrifice one drop of sympathy and compassion for grieving families.

So I started volunteering to take these patients even when it wasn’t my “turn”. And my passion for the perinatal bereavement movement and community grew. I attended conferences and eventually became a certified coordinator. I mastered handprints and footprints, making ceramic casts of all size baby feet and taking photos few people will ever see. I made connections with amazing volunteers who make the most beautiful baby clothes from donated wedding gowns. I’ve attended various events in support of infant and fetal loss and I’m a unit resource for all of the nurses who feel the same sense of being overwhelmed when it’s their turn to say “I’m sorry.” And no matter how many stories I hear, no matter how many tiny feet I hold, no matter how many tears I wipe, it never stops being hard.

There is no sound like the wail of a bereaved mother. There is no silence as heartbreaking as the silence of a baby’s birth. There is no harder place to stand than alongside a sobbing mother as you hold her newborn whose heart no longer beats. There is no worse place to be than in the place of a mother who has lost her child. And there is no greater honor than to hold a baby few people will ever know. There is no greater service that I can provide. And there is no person in greater need of guidance, assistance, nurturing and memory building, than a parent who has been robbed of their child’s life time.

Over the last 12 years as an OB nurse, I have helped dozens of parents through the loss of their babies. I no longer feel as overwhelmed as I did that first day because I know the inevitability that these circumstances have in my field of nursing and I know the importance of the service I have to offer. While I don’t always cry on my way home anymore, each time I cradle a baby born still or born too soon, their tiny feet leave an imprint on my heart and the tears of their family become a part of me. I am forever changed by the fleeting presence of these little angels.

Not all of us are called to do this work. Nursing as a profession and post-mortem care of an infant is enough to break some people. I get that. But as family, friends … human beings, we all have an obligation to these families. We have an obligation to try to understand them and support them to the best of our ability. According to the March of Dimes, 1:4 pregnancies end in loss. You will be confronted with someone’s loss of a pregnancy during your lifetime and you can help.

From my experience, these are some of the truths that I have learned:

• A mother’s love for her child begins not with the first sound of the heartbeat, not with the first movement she feels, not with the first cry. A mother’s love begins when she is a young girl and she first dreams of becoming a mother. That seed of love then grows stronger every step of the way. Infertility, early miscarriage, death due to severe prematurity or birth defects … they are all painful because they all involve the loss of a dream. The seed of love had already been planted before that mother even considered planning a pregnancy. Every baby is loved beyond measure by the parents who dreamed of their existance, no matter their size or age.

 

• A mother’s love is forever and no matter the condition or the age of her baby she will see only beauty, tragic beauty … but beauty … even if the rest of the world doesn’t see it; and it lives FOREVER. A mother will never forget the child she lost. Whisking the baby out of the room won’t save her from anything. Pretending that it didn’t happen, won’t fill the void in her heart. Let her hold her baby, dress her baby, read to her baby, love her baby. That baby is her beautiful creation and she needs to embrace it, not be protected from it. Whatever imperfections we as outsiders might see, a mother always sees the beauty.

 

• While we can’t always prevent tragedy, we can build memories and bonds in the face of tragedy. And these are worthy and essential practices that allow for faster healing and closure. Studies and statistics support this. Allowing parents to have time with their baby – to hold them, dress them, read and sing to them, introduce them to family and friends and younger siblings, allows the parents to feel that their baby’s existence held meaning and that their baby truly had a name in this world.

 

•  People need to grieve and grief is labor. No one can do it for you. No amount of “It’s time to move on” or family members taking down the nursery and packing away the clothes will hasten the process. Parents need to cry in their empty nursery and pack it up themselves. Don’t rob someone of their grief process. Instead, support them, hold their hand and wipe their tears while they do it themselves. Whilst painful, it is a necessary journey. – This is an important generational change that older generations, in particular, need to be made aware of. We have learned that the “old way” of packing everything away and neglecting to acknowledge the truth was not only un-helpful in “moving-on”, but it was painful to the parents and led to a dysfunctional grief process.

 

• In an effort to offer comfort, we must be careful not to make comments that are unhelpful or dismissive. This often happens because people are uncomfortable and don’t know what to say. They are often well-meaning in their intentions but the comments themselves are hurtful to the grieving parents. In infant and fetal loss these comments often include: “At least you can get pregnant,” “It happened for a reason,” “Maybe it’s better this way,” “You can have another baby,” “It’s better than having a baby born with problems,” “Maybe you should/shouldn’t have eaten/done that,” “You’re young…there’s plenty of time,” and “You’re lucky to have other children.” Instead, “I’m so sorry,” “I’m here for you,” “You’re a wonderful Mom/Dad!” and even respectful silence are much more helpful and exude your support.

 

• Different cultures have different rituals surrounding death. While one family may take their baby home and hold a vigil and viewing for their family and friends to meet their baby in their home, another family may feel bound to their religious practice to bury their child within 24hrs and the mother may not even be released from the hospital yet. It is vitally important that these beliefs and practices be protected. Allowing someone to practice their own rituals allows for an inner peace that promotes healing and closure and helps prevent regret. We wouldn’t want an outsider to dictate how we choose to plan our loved one’s final disposition. So, we must be careful not to do the same for others.

 

• Back to that forever love … intentionally not mentioning the name of a lost child doesn’t save their parents from additional pain. Every day of their lives they remember that child. Mentioning their baby’s name won’t make them suddenly remember him/her or make them sad. They always remember and their sadness is from their loss, not from your remembrance. Instead, mentioning their baby’s name shows them that their child was a person and that they have meaning and worth and are remembered; though the context of the moment should be appropriate and the remembrance should be a respectful one. Reading people’s body language is essential when navigating grief- back-off if they appear uncomfortable; and there should never been any prodding for details. But don’t be afraid to bring their name up, a simple inclusion of their name validates their existence and that is powerful for a parent to hear.

 

• In life there are things that we can’t begin to understand, horrible things, unfair things. We will ask “Why?” until the day we die and rarely will we ever get an answer. This should not be received as a lesson to fear the unknown but instead as a lesson to relinquish control. Nothing we can do can prevent certain tragedies from happening and we have to stop kidding ourselves that we can control every part of life. As parents we can only do our best, and then, we have to hope that it works out in the end. And if it doesn’t, we need to know who to call. We need to know who will be there to hold our hand and help us navigate and cope. Sometimes the very best parents lose their children. Regardless of the age or cause of death, we need to help them alleviate any sense of guilt and uphold them.

 

According to the March of Dimes and the CDC, approximately 4.4 million pregnancies are confirmed every year in the U.S. About 1 million of these end in loss. 500,000 end in miscarriage before 20 weeks gestation, 26,000 end in still birth, 5,000 die from birth defects, 24,000 infants die in their first year and about 3,700 infants die from SIDS. And while the infant mortality rate in the U.S has dropped by 15% in recent years, it is still ranked incredibly high, at 5.8 deaths per 1,000. This is terrible in comparison to other developed countries.

Infant and fetal death awareness not only shows our community how to provide the support that grieving families need, but it also calls attention to a much-needed area of concern. Awareness yields research and research can help us to understand causes and lead to prevention.

I have never lost a child, and I hope to god I never do. Maybe that’s why my work in the perinatal bereavement community works so well. Maybe if I had lost a child, it would hit too close to home. Maybe it would be too hard to separate my “nurse” self from my “Mom” self. But as long as I can do it, I will. Because those parents need support more than anybody. Because the stigma associated with the death of a child needs to stop. Because losing a baby shouldn’t be “taboo”. And every person, no matter how small, should be remembered. Because the “Mom blame” that occurs every time a child dies or doesn’t reach their “potential” is poisoning our culture and killing wonderful mothers everywhere who are dealt the shittiest hand one could ever be dealt. It’s our job, everyone’s job, to change these ideas and give parents the support they need and their babies the remembrance they deserve.

In October of 1988 President Regan proclaimed October as “National Pregnancy and Infant Loss Awareness” month, because he recognized that these families needed more support and that these babies needed to be remembered.

October 15th is International Pregnancy and Infant Loss Remembrance Day. A practice was started to remember these babies with a “Wave of Light” across the world. On October 15th, from 7-8pm, your time, light a candle and place it outside. The idea is that a wave of light will travel across the world as each time zone takes a turn burning a candle for their babies. You can find more information here: http://www.october15th.com

And if you have been affected by infant or fetal loss and are in need of additional help and resources, there is a ton of help out there and you are not alone. One such site is http://nationalshare.org/online-support/. And there are many, many more. Contact me via this blog if you need further assistance.

I trust my heart will never stops aching for the babies who came but couldn’t stay and the shattered dreams of parents who would’ve given it all for a different ending to their story. But despite the tragedy that is very much a part of my work, there is still hope and strength and so much goodness. With much humility, I thank the families who have allowed me to enter their very precious and sacred space, to know the baby that few others knew, to hear their stories and learn from their grief. I am better because you let me in. And I hope I helped you too. And I thank the workers, the volunteers and all of those who didn’t avert their eyes, but instead sacrificed their own comfort to stop and to listen, to understand, to help and to support. In our weakest moments, it is our pillars who come to stand beside us and hold us up, that regardless of relation, become our family. It is an honor to be a part of the perinatal bereavement family.