Category Archives: Neonatal Diagnosis

On the Fourth Anniversary of My Newborn Daughter’s Death

          for Eva on her first birthday not on this Earth

Grief hits me as hard and suddenly as the hail storm pelting the garden I grew from seeds. Four-year grief builds with the moisture of the Gulf of Mexico that collides with the weather of the Rocky Mountains creating summer white groundcover of hail. My fairy garden strawberry plant sits in the white of hail. Tomato plants are pelted and bruised, limbs broken, leaves dying from the impact. Delicate string bean leaves with holes, sunflower leaves also broken. The 37 rose bushes on, what my son calls, Rose Way, look weak and sad. I am stunned by the fierceness of the winds, so many leaves from the trees down, but I get to work, my fingers frozen and muddy as I scoop out the round cold hail from newly planted strawberry plants. Will they make it? I wonder.

Later in the week I harvest three zucchini and cucumbers, a handful of string beans and the two strawberries left after the storm. Tender dark leaves of lacinato kale. My humble harvest. They are all marked where the hail bounced off of them with force.

And then as August approaches I weep uncontrollably in the darkness of the night, as I did when I was pregnant, and knew that my baby would die. My son is asleep after he asks me again if we can have another child, my husband’s c-pap machine whirrs. Why so many tears at the four-year mark?

My sister brings me a beautiful copper-plated aspen leaf ornament from Breckenridge. It’s not a birthday present, she says, It’s more of a remembrance.  Terry whose two beautiful daughters died of cystic fibrosis leaves a message. And as August 8thapproaches, all night I dream of meeting Lori, mama of sweet Eva, whose older brother lives and thrives though grief batters their family as well.

What do you do on Mary Rose’s birthday? my neighbor Angela asks, as her baby girl proudly toddles around the yard. I tell her I need quiet. I shore up in stillness and protect my heart with kindness. Only those who can love a mother bruised by grief can come near. I say no to volunteering at school this week though we are moving into a new building. No to crowds of people chatting. No. No.

But I have to get by, have to walk through the days. I remember feeling this way when the contractions swelled in my body for days, when I labored and then was emptied of my baby girl.

I have buried many this lifetime.

My son wants to make a pistachio cake with rose buttercream. Cake, I think. Cake for a dead baby’s birthday? I will make cake for my living son on my daughter’s birthday.

Dirt soothes me. I plant another rose bush, a butterfly bush, some coreopsis on Mary Rose’s birthday. I plan to thin the irises and surround myself in their bearded blossoms,  plant new bulbs that will surprise me in spring, but it takes hours to plant a few plants in the Colorado clay soil. I am limited in what I can accomplish this summer. I amend some of the soil with my own compost and planting soil. I bless each plant and hope it blooms in the coming years.

For those who think that this grief signals a lack of acceptance – life is not an either/or situation. I accept my daughter’s death from trisomy 18, and I will grieve her with my body and heart until I die because I am her mother. Because we are one with the Earth that also lets go and grieves. I am true to her memory and her daughterness. Though people would tell us that we should move on, I am here holding space for my daughter and my grief. Space for my living son with his losses and milestones. Space to do this work of grieving and being in the reality of both great joy and sadness simultaneously.

On my daugher’s birthday and every day I pray, Mary Rose, my daughter still, I love you.

Interview with the International Grief Institute

 

It was my great honor to be interviewed by Lynda Cheldelin Fell of the The International Grief Institute to discuss Mother’s Day after pregnancy and infant loss. We discussed my pregnancy with Mary Rose, miscarriages, Trisomy 18 and grief.  The link follows.

https://www.youtube.com/watch?v=eChpI__dMl0

August Book Giveaway on Goodreads

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Mary Rose’s birthday month is here and we are offering eight signed copies of Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Newborn Death this month on Goodreads. Enter to win a copy by CLICKING HERE:

Goodreads

 

 

E-book Launch!

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We continue to promote Walking the Labyrinth of My  Heart: A Journey of Pregnancy, Grief and Newborn Death, and today we launch the e-book, which is now available on Amazon. This exciting news means that the book is now available around the world!

I am very grateful for the support of my readers. Each time you share my work with others, we are able to offer comfort and guidance to bereaved mothers. It gives me joy to know that in my small way, with this small book about my daughter, Mary Rose, I am able to comfort a sister-in-grief facing pregnancy and infant loss.

Please continue to help spread the word through social media. I have had feedback saying that there is no other grief book on infant loss like this. To read more about why I wrote this book please CLICK HERE.

An added bonus is that though the images in the print book are in black and white, they are in color on newer devices in the e-book. The Heavenly Garden memorial page honoring the souls of the babies and children whom I have met since my journey with Mary Rose began is here in color as a SAMPLE OF THE EBOOK

Look for more giveaways of this book on Goodreads in August to honor Mary Rose’s birthday and in October for Pregnancy and Infant Loss Awareness Month. Please sign up for updates on my blog so that you can read my guest blog post coming up with Spiritual Living about angels.

If there are any topics that you would like me to address in future blog posts, please send me a message on Facebook or Twitter or comment below.

We are in this lifetime together, and together we can grieve more fully to continue walking in the Light.

 

If you would like to purchase the ebook please CLICK HERE

Book Launch: Why Did I Write This Book?

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Book Launch: Why a Book about Mary Rose?

Books about grief, pregnancy and infant loss have already been written. Yet when I was a pregnant woman walking around in a daze of grief after a prenatal diagnosis of trisomy 18, I did not find comfort in books, the place where I have always found comfort. Other than Nancy Mayer-Whittington’s For the Love of Angela, no book was raw or honest enough. In my state of pregnancy-awaiting-death, I wanted truth. I wanted to know how I could survive carrying life and death inside me. I wanted someone to explain the madness of grief that lasted far longer than Mary Rose’s brief life. I wanted to know that my unborn baby wouldn’t suffer.

In my pregnancy I came up against people’s judgements and beliefs about pregnancies with life-limiting diagnoses and life support for newborns. I fought the system to birth my daughter at home and give her a quiet peaceful life. I prepared her body for burial on my own bed where we held her, where she died. In the aftermath of my grief, I came face to face with our culture’s ignorant ways in treating the bereaved. Many kind people comforted us, but once I left my house cocoon and reentered life, I felt silenced and judged for grieving. Some people think that I am angry, but I am not angry. I am writing to speak my truth. Grief can take a lifetime to process. Grief is also infused with joy, as we live again.

To get to that joy, we first need tender love, a way to process our grief (I chose art), and the truth that life and death are inextricably linked. They always were. They always will be. Babies sometimes die. Women sometimes miscarry. I write Mary Rose into a book and send her out into the world to comfort women facing pregnancy and infant loss. I write to support communities – real communities – that walk together through the joys and grief that comprise human experience. Mary Rose’s book is as raw as a pregnant mother buying a casket and planning a funeral. It is as real as breath and love.

Today White Flowers Press launches Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Infant Death. The numbers are staggering. One in four women miscarry. One million babies die in this country before their first birthday. We all know women who have had their pregnancy losses, but most of us continue to ignore them because they are uncomfortable. This book addresses the social awkwardness that we feel around death and grief. It addresses the grieving mother, but also the family and friends that surround her not knowing what to say.

Every page of this book was watered with my tears; I kept writing anyway. I did not walk my pregnancy alone, and I do not want anyone else to be alone in that sacred space. I had my mentor Cubby, my parents, my sister, my closest friends. A therapist. A few midwives. A homeopath and bereavement doula. A son. A husband. A priest and his wife. A shaman. And the blessed nuns who pray in their little rooms for this broken world. Not every woman has a midwife to accompany her to the scariest of doctors’ appointments. How long can my baby live? What do I do next? And so I write for my readers.

In her memoir The Chronology of Water, Lidia Yuknavitch ends her book with these words:

Listen I can see you. If you are like me. You do not deserve most of what has happened or will. But there is something I can offer you. Whoever you are. Out there. As lonely as it gets, you are not alone. There is another kind of love . . . . This book? It’s for you. It’s water I made a path through . . . . Come in . . .

Yuknavitch is talking about art. The art of words and books and many media. I agree that art is a gift, but the gift is also truth and an open loving heart that loves our vulnerable babies who are miscarried, born still or die soon after birth.

After my pregnancy I did research and found out the most important thing. If Mary Rose had lived, she would not have suffered. Why didn’t my doctors tell me that? I was so anxious in that unknowing. I intend for this book to clear up the blur of getting a life-limiting diagnosis during pregnancy, for it to be a companion as we walk through the fog of grief. You are not alone. Many women have gone before you, walking this path, since the beginning of our myths and stories. And those babies who were miscarried, born still or alive, who lived a minute or a day, their souls are perfect and the stories of their lives will heal our own grieving souls.

Today on the launch of Mary Rose’s book please share this blog post, if our work resonates with you.

I am grateful for your help and support.

To purchase Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Infant Death please click on this link:

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Interview of Lakshmi, Pregnant with Siddha, Baby Diagnosed with Trisomy 18

I hope that readers find comfort in this video that was so comforting to me when I was pregnant with Mary Rose. I watched this video again and again, seeing Lakshmi, a mother whose unborn baby was diagnosed with trisomy 18 at 20 weeks of her pregnancy. I remember sitting at my dining room table after my son and husband were asleep weeping. Lakshmi was preparing herself to birth and let her son go. Shiloh Sophia McCloud, says “This tragedy is becoming a blessing.” She asks Mother Mary, “The Great Lady,” to bless Lakshmi and she did. Her son, Siddharta Izarra was born living on April 10, 2014 and stayed for a few days. I will be writing more about community now that Mary Rose’s book is done. Here we see a circle of women. I hope that each of us can be a part of a tribe and both receive and offer love and support as we live through various challenges. My virtual arms are open to families who will let go of their beloved babies too soon. And thanks to technology Lakshmi and I have become friends through Facebook. We are both blessed as we continue to walk our paths after loving, birthing and letting go of our babies. They are with us still…

The Bereavement Doula

mary rose leslieDuring one of my prenatal visits I mentioned that I wasn’t sure if I should hire a doula for my second birth. I had been going to a number of doctors’ appointments and did not have much time to think about my needs or labor. There was so much to do to confirm Mary Rose’s “diagnosis” of trisomy 18, to plan for her birth and her death, to see specialists about her defects and to understand her illness the best that I could when medical doctors answered “We don’t know,” to my many questions. Midwife Gloria said, “You should hire a bereavement doula.” And I replied, “How could there be such a thing?” She suggested that I call Leslie Cuffee, and set up an appointment. She was known in her community as a doula who could witness the death of a baby. Leslie’s first birth as a doula was still. When parents need her to walk them through a difficult pregnancy, she is present.

Expectant mothers hire doulas to support them through their labor and after the birth. A doula often spends more time with the mother than a doctor or midwife. They preserve the birthing space and do their best to work with providers to keep the mother’s wishes for her birth plan in place. They also seem to be experts at back massage just when the contractions crescendo, and know of natural methods to work through the hours of labor.

When I met Leslie she told me that I would write a book about Mary Rose. I looked at her confused in my daze of shock and grief. “Forget your poetry and your novel. This is the book that will come first,” she said.  Leslie felt that there was a need for a book about life and death, a book that embraced all babies regardless of their expected outcomes. She is one of the few who held my daughter after she died and smiled, looking at her face. She accepted God’s will for Mary Rose and didn’t question my daughter’s value as a human being. Leslie told me of a birth where a baby was born with its organs outside of its body. She held the tiny body and told me that she was beautiful. I knew that Leslie would love Mary Rose in life and in death.

In her book Birth, Breath & Death: Meditations on Motherhood, Chaplaincy and Life as a Doula, Amy Wright Glenn discusses her spiritual path and her work as a doula and later as a chaplain.  Many birthworkers, be they midwives or doulas, turn to chaplaincy work. A doula holds the space for that newborn to be breathed. A chaplain holds the space for that breath to cease so that the soul can leave behind the sacred vessel of this life and journey on. It is holy work to witness the first and last breath. Wright Glenn writes “Learning how to live involves learning how to die. Love alone is the most potent power illuminating the breath’s journey in between these thresholds. Love is the key. Love is the dance” (47). Mary Rose has taught me to embrace death fully as a part of life. How could I honor her without honoring her death? How could I love her and hold her without freeing her to do the sacred work of her life from the heaven worlds?

Before I became pregnant with Mary Rose, I watched my aunt suffer and die from atypical meningioma. She was bedridden for close to 18 months, her body betraying her desires to move and travel, yet she held onto this life as if it was everything for her. It took her a long time to die. My pregnancy put my aunt’s “young” death at 64 into perspective, but I sometimes reflect on how gentle and peaceful Mary Rose’s passing was, as opposed to my aunt’s struggle and challenge to let go.

We are all going to die, though this seems to be what we fight most in our culture. Some of this is biological. The body will fight with all of its will and programming to survive, but there comes a point when we as a culture can take a step back and accept life cycles. It is not good to live and bad to die. Death comes to all sentient beings and we are transformed. Whether people believe in an afterlife or reincarnation, or nothing at all past the breathing of this body, our bodies will be vacated and they will go back into the earth in some form and become something else: the flower, the field, the air we breathe.

Mary Rose’s birth was long, but Leslie, my midwives and Sindy did not complain. They slept very little and walked with me as I gathered the courage I needed to let my baby go. In my body Mary Rose was safe, but once born would she breathe? Could she eat? The hours before Mary Rose was born were holy. We laughed, practiced yoga, breathed and cried. And when the moment came to enter this world and this life my daughter was welcomed and embraced.

Bereavement and birth might seem contradictory, but sometimes life on earth is short. I am grateful that there are women who are brave enough to face life and death in the quiet and stillness that seems lost in most of our fast-paced, post-9/11 world. In her poem “The Summer Day” Mary Oliver asks “…what is it you plan to do/with your one wild and precious life?” I plan to be present for the transitions that await me, for those I love and for myself. Like the doula, let’s be present for our babies, our parents, our loved ones and even ourselves. Let us bless the bereavement doulas and the chaplains and the ministers who aren’t afraid to hold our hands and wait with us as life breathes us, for the appointed hours.

Trisomy 18: The Range of Possibilities

sunset_birds_clouds_213977          for Nora, who gives us hope.

One of the difficult things about trisomy 18 is the range of possibilities. How can a mother prepare for her baby’s birth when it might be born still or live for a few months? How do you prepare for the labor? Is it time to get a nursery ready? How do you nest? I struggled a lot with this range during the pregnancy and when my daughter, Mary Rose, died an hour after birth, I felt unprepared. That was it? Where were our tender, special moments? How could it be over so quickly after so much anticipation and such a long pregnancy? I know that I am one of the lucky ones. Though my daughter was barely breathing I looked into her eyes and saw that they were blue.

When I wrote grants for a living I depended on data to help me build my case for my projects. I am no stranger to research and data and I know what to do with the numbers when I get them. However, the numbers for trisomy 18 baffled me. The doctors give you a brochure that lists a number of defects that would frighten any pregnant women. The brochure says 92-95% of babies born with trisomy 18 die before their first birthday. The medical establishment says that trisomy 18 is incompatible with life. I wanted to know about that 5-8% who live.

Trisomy 18 is an illness with multiple defects. The child’s brain is severely disabled. In the pictures that I have seen 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. How would I manage my family’s needs when I live far from my extended family? What would the impact be on my young son? I mentioned my fear to the genetic counselor toward the end of my pregnancy and told her that I was concerned that Mary Rose would live and suffer. I mentioned mosaicism and she blurted out: “Your baby has the full-trisomy 18.” I had agonized for months over this, but was never given this information that was apparent from the genetic testing.

I looked and looked for stories, for answers. Who lived? Why? I found a blog about a boy on life support who was three. I found a few other cases of children who were alive and young. Except for very rare exceptions these kids were on life support and had undergone multiple surgeries and hospitalizations to deal with their defects such as heart and other organ defects. They breathed through a trach and were fed through machines. A couple of the children had mosaic trisomy which means that the programming of all the cells are not carrying the trisomy 18 gene. Children with the mosaic illness function at a higher level and often can breathe on their own and even eat.

According to my online searches most of the 5-8% of babies with trisomy 18 who live appear to be on life support. I read about these children in newspaper articles and on blogs. The data seem skewed. For parents who choose not to be on life support, what are the numbers? For parents who choose life support, what are the numbers? I asked doctors what would happen after my daughter’s birth and was told repeatedly “We don’t know. We have to wait and see how strong she is when she is born.” 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.

It is important to note here the big controversy surrounding the term “incompatible with life.” People are trying to get this term removed from the description of trisomy 18. I know that very few of these children live, and that 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 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. This is not to say that babies who live don’t deserve to be treated by doctors in the most ethical way. I spoke to a neonatal cardiologist to see about heart surgery for Mary Rose and he did not recommend surgery. He said that if she could live long-term after the surgery, he would be willing to do it, but the heart he said, is only one defect of many. He also informed us that most of the babies who undergo heart surgery in Mary Rose’s condition never come off the trach. Was he being unethical? This is a man of faith who spoke honestly. We never got to the point where surgery was an option but my husband and I decided that we probably would not opt for surgery. We didn’t want to cause any suffering for our unborn daughter.

This week I was very touched by the comments and emails and replies I got to my chapter “Homebirth and the Fatal ‘Diagnosis’” that I posted on my blog last week. One woman reached out to me to tell me of her homebirth in 2000. Her daughter, Nora, was born at home with full trisomy 18 and this is rare. I made the assumption that Nora was gone like all the other babies I know with this illness. Nora’s mother shared her story with me. Her daughter lives at 15 without life support. I found some photos of her family on Facebook. Nora looks like an angel. Her eyes exude the deepest peace. I am so blessed to know her, to add her story to this work. Nora’s story is rare. So how do we prepare for the different outcomes?

A baby was born this week at under four pounds with trisomy 18 and she lives. The baby, Grace Miriam, had three diagnoses and lived for six weeks. Mary Rose slipped away peacefully after birth. Others are born still. How are we to know what will happen? When dealing with trisomy 18, as with all other things in life we can only stay in the moment and breathe. As we all know, some moments change our lives forever. The accident, the diagnosis, the illness comes one moment and nothing is the same. This happens when we give birth. It happens when we hear news we don’t want to know on an ultrasound. And it happens with trisomy 18. But our lives also change suddenly when we meet someone who lights up our soul, are offered a new job, hold a positive pregnancy test in our hand, and sometimes even when we witness a sunset dotted with birds migrating south for the winter. I am open to this continuously changing Universe and I lift up my heart and pray one more time that whatever comes today is for the highest good of all.