"Dianna Vagianos Armentrout is courageous! She will not stay silent like so many people out there. She knows her story needs to be told."
Miscarriage and infant death is usually a secret in most families or least; they are not discussed out in the open. When I was a teenager, I overheard my Mom and Aunt talking. It turns out that they both had several miscarriages and my aunt lost a baby within hours of giving birth. I asked them about it and they said it was none of my business. They both looked ashamed and I didn’t understand why, I still don’t to this day. I am sure it wasn’t their fault that it happened to them. In fact, as an adult, I know it is a very common occurrence. Perhaps if it wasn’t swept under the rug, perhaps parents could better deal with it!
Dianna Vagianos Armentrout agrees that the loss of an infant should not be kept quiet either! In fact, she writes a book about her own experience of losing an infant, titled Walking the Labyrinth of My Heart. She wants to be able to talk about the daughter she lost, Mary Rose and keep her memory alive. She wants to honor her, not swept the remnants of her memory under the rug. Truth is powerful and Dianna tells her truth!
She uses journal entries, essays, and poetry to tell her truth in the inspirational memoir. In writing it, she also wants to help other parents that have lost a baby. I can also tell from her writing that this was a cathartic experience for herself as well.
Dianna Vagianos Armentrout is courageous! She will not stay silent like so many people out there. She knows her story needs to be told. That she won’t heal unless she talks about what happened to Mary Rose. She knows that they are many parents hurting the same way she has been hurting and she wants to help. I think she is a hero for shining a light on a taboo subject!
Walking the Labyrinth of My Heart comes from the heart. It is well written and inspirational read. I highly recommend it to parents, grandparents, or anyone who has experienced the loss of an infant or has experienced miscarriage. I give this book 5 stars!
I received this book for my honest review.
Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Infant Death breaks the lonely, silent suffering of bereaved mothers facing infant and pregnancy loss. Dianna Vagianos Armentrout details her pregnancy journey with her daughter, Mary Rose, who died an hour after birth of trisomy 18, a random genetic illness described as “incompatible with life.”
For five long months of pregnancy, she knew that her baby would not live and thrive, planning a funeral and seeking hospice for her unborn daughter. The heaviness of this grief, which most women bear alone, is shared here and will comfort mothers who have experienced miscarriage, stillbirth and infant death.
With eloquent language, fierce honesty and a record of the rawness of grief, readers in the midst of their own suffering will recognize the path that bereaved parents walk. Dianna’s experiences with infertility, motherhood, infant loss and miscarriage infuse her writing with compassion for all women.
Through journal entries, essays and poetry, Dianna invites the reader to process grief and honor the life of the child, no matter how brief. In addition, readers will learn how to support the bereaved by remembering the baby and pregnancy.
Finally there is a book to honor the pregnancy, baby and loss, loving the children past their death, loving the wombs that nurtured them and accepting the sacred path of mothering children whose bodies are broken, but whose souls are intact and perfectly whole. This book shines with love and the knowledge that even the briefest life is holy.
Read it. Share it. Spread the word. We no longer have to grieve our infants and pregnancies alone.
Praise for Walking the Labyrinth of My Heart by Dianna Vagianos Armentrout
Pregnancy and Trisomy 18
by Dianna Vagianos Armentrout
I was scared when I entered the clinic for an ultrasound during my second pregnancy. Did I have a feeling that my baby might not be healthy? My husband was there. My almost two-year old son was excited to see his baby on the monitor. I was 21 weeks pregnant and something was wrong. The ultrasound technician looked nervous and went to get a doctor. Two doctors came in. My son fussed. Our unborn baby most likely had trisomy 18 or 13. Blood tests confirmed that our daughter, Mary Rose, had full trisomy 18, a random genetic illness that most often ends in death in the womb or shortly after.
The doctors gave me a brochure that lists a number of defects that would frighten any pregnant women. Ninety two to 95% of babies born with trisomy 18 die before their first birthday. The medical establishment says that trisomy 18 is incompatible with life. Trisomy 18 and 13 are illnesses with multiple defects. They are similar, though often trisomy 13 also includes cleft palates. The child’s brain is severely disabled. In the pictures the infant opens one eye, the jaw is slack, the fingers are in a different position, the chin is shorter, the feet are longer, the head is bigger, the ears are deformed. I read all of these defects and worried that my child would be so deformed that I would have a negative reaction to her. I wondered how I would handle my daughter’s illness if she lived. I also wanted to know about the 5-8% who live.
According to my online searches most of the 5-8% of babies with trisomy 18 who live appear to be on life support, unless they have mosaic trisomy which is less severe. I read about these children in newspaper articles and on blogs. However, in the publication Care of the Infant and Child with Trisomy 18 or Trisomy 13: A care book for families, I read that “5-8% of these infants live past their first birthday without extraordinary measures. And, once a child’s age is greater than a year there is a 60% chance to live beyond age 5 years.” It is estimated that there are 200 people in the United States alive and older than one years old with trisomy 18.
The term “incompatible with life” is controversial. People are trying to remove this term from the description of trisomy 18. Very few of these children live, and they need doctors who will treat them (often doctors don’t want to treat babies with trisomy 18 or 13), but most of these babies do not have the programming in their bodies to thrive. In addition to the defects and the disabilities, the children have incredibly weak muscle tone. This is why Mary Rose’s jaw was slack, why her limbs were splayed in all directions when I held her in my arms. This is the reason that most of these babies cannot eat or eat enough. Their sucking motion is too weak, if they can suck at all. As a mother of a daughter with trisomy 18 who died, the illness seems incompatible with life, and even though some live, most of these babies die. Just because most babies with trisomy 18 die, does not mean that those who live do not deserve to be treated by doctors in the most ethical way.
We chose to carry our daughter to term, to allow her life to be what it was without medical intervention. (It is estimated that 90% of babies with trisomy 18 are aborted.) We did not choose to put our daughter on life support, though other families do. It was a difficult decision, and there is not one right path. I wrote my memoir as a how-to for families surprised by life-limiting diagnoses during pregnancy. What do you do when your child could live or die? Do you plan a funeral? Get a pump for feeding? And if the baby dies, do you arrange for a photographer and birth announcements? Pregnancy is a journey often associated with some trauma and loss of expectations in how one births. My pregnancy with Mary Rose added many layers to the life-changing experience of birth. I am offering a way to honor each baby’s life, no matter how brief. I also want to honor all families regardless of the choices that they make along the way.
Mary Rose expanded our hearts and changed us in many ways. Love overtakes birth defects and illness and shines through anyone who opens her heart to one of these babies. Their life might be shorter and different, but no less valuable than a healthy baby’s life. We need more support as we birth and nurture children with disabilities. We also need more support to live with grief. I hope that my book, ‘Walking the Labyrinth of My Heart’ helps people walk their path with integrity, support and appreciation for life, even when a life is broken and brief.
Dianna Vagianos Armentrout is a published writer, teacher, workshop facilitator and poetry therapist. She graduated from Adelphi University’s Honors Program and earned her MAW from Manhattanville College. Dianna’s pregnancy with her daughter, Mary Rose, who died an hour after birth of trisomy 18, changed her life completely. Her blog, Walking the Labyrinth of My Heart, was launched in April 2015 as a way of offering support to others going through pregnancies with difficult and fatal diagnoses.
Dianna wishes to change the cultural fear of death and social awkwardness around the bereaved by educating others to be present and open to the natural process of death. Not knowing what to say is fine. Let’s sit together quietly not knowing what to say about our most difficult and sacred losses, because a loving community is vital to the healing of the bereaved in our broken world. Dianna volunteers with Isaiah’s Promise as a peer minister, and can’t help sending “Healing Companion” cards to mothers facing pregnancy and newborn losses.
Dianna’s poems, short fiction and essays have been published in several journals and anthologies, including The Vermont Literary Review, The Connecticut Review, The Dos Passos Review, Melusine or Women in the 21st century, Sacred Fire Magazine, Sensations Magazine, and Inkwell. She has taught at Southern Connecticut State University, Quinnipiac University and The Graduate Institute, and has facilitated poetry workshops in the tri-state area. As a poet and teacher, she believes that everyone has the inherent gift of poetry. Her workshops create the space for people to be still and access their own words, images and metaphors as they step into their healing.
She lives at the foothills of the Rocky Mountains. When she isn’t writing or reading, she spends her time outdoors walking and gardening. Dianna also tinkers with recipes for paleo cookies and shares them with those around her.