I was interviewed today by Kelly Meehan-Tobatabo of Spirit Baby Radio. We shared our perspective on grief and loss and moving our pain towards the light. Click on the link below to listen to our conversation.
I was recently on a Facebook group page honoring Ina May Gaskin, the pioneer home birth midwife. A mother at the end of her fourth pregnancy wrote about having nightmares after seeing a post about a baby who died at home. This mother was looking for comfort and sympathy. She never mentioned the specific post, but I had posted my home birth story and a photo of my daughter who died of trisomy 18 after birth months ago. I wasn’t sure if my daughter’s photo was the one that gave this woman nightmares, but I got upset, as did another mother whose daughter died a week after birth. As with so many of our social media forums, this post got ugly. A birth worker admonished the bereaved mothers to “do no harm.” We could grieve, but it would be more appropriate to go someplace else. Our birth stories that ended in death had no place on a forum about birth. Our pregnancies, labors and babies are not welcome here. One woman wrote that she believed the referenced post was meant to be incendiary and had been removed, but I’m still not sure.
The numbers of pregnancy and infant loss speak volumes. One in four pregnancies end in miscarriage. One million babies die each year before their first birthday in the United States. Where are bereaved mothers to go? Why is our reality not a part of our cultural discussions of new mothers? I believe that we can form strong alliances and communities where our culture becomes loving enough to celebrate our babies and their short lives. In my dreams, I am embraced in my grief, instead of ignored.
The Baha’i Faith speaks of unity. We cannot have Christianity without Judaism. We cannot have light without the complicated shadows that also live inside each human heart. There is no life without death. Bahá’ulláh says “Of the Tree of Knowledge the All-glorious fruit is this exalted word: Of one Tree are all ye the fruits and of one Bough the leaves (53). All mothers, regardless of outcomes are one body, yet we continue to put up barriers and separate ourselves from each other.
The cultural concept that pregnancy always ends in happy mothers nursing healthy babies does not serve us. We must be brave as we face each pregnancy, each child, because we do not know the outcomes. A healthy living baby does not have more value than a child who dies. I know. I have one of each. If we measure our lives with love, then each soul has a place at the table of the heart.
I have much to celebrate each day, including my sweet daughter, whose life continues to encourage and help others through my book about her impact on my life, Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Newborn Death. But my tender heart continues to grieve when I watch my son play alone, negotiating his reality of why his sister died. My eyes tear up when someone asks me again how many children I have.
I wasn’t sure if I should address this situation, and one birth worker, on my blog, but I was so disappointed in the way that the comments came rolling in, and I was not the only mother offended and hurt. This post is my response to the birth worker who believes bereaved mothers might upset pregnant women. First do no harm, she replied to me again.
I will continue to do no harm by speaking up and writing for my sisters who are infertile, for mothers with no living children, and for those of us who carry our deceased babies in our hearts every day and every hour. We are one body of human sisters and need to unite in community to support one another.
I will continue to do no harm. How about you, Sister?
To read my original post that I shared on the Ina May Gaskin Fan Page click here: http://www.diannavagianos.com/blog/?p=269
Esslemont, J.E. Bahá’u’llah and the New Era: An Introduction to the Bahá’i Faith. Wilmette, IL: Bahá’i
Publishing, 2006. Print.
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:
A few months ago Lauren contacted me on my blog and shared her home birth story about her daughter, Nora, who had trisomy 18. When I wrote back I assumed that Nora had passed away like the other babies with this illness that I know. Nora is fifteen, Lauren replied. I was surprised and grateful that Lauren answered my questions. Yes, Nora has full trisomy 18. Yes, Nora breathes on her own. I was so touched by the story and by Lauren’s openness with me that I dedicated a blog post to Nora. “Trisomy 18: The Range of Possibilities” for Nora, who gives us hope.
Lauren wrote to me on Easter Sunday to tell me that Nora transitioned to her next life on March 16th. She passed away peacefully at home, where she was born, surrounded by her mom, dad, brother, and sister. We laid her out at home afterwards, Lauren wrote. Nora was buried in a natural wood cocoon decorated by her family and friends who visited. (See below.) I sense Nora’s gentle spirit and I love the way that her family handled her body and burial. Soft. Holy. A gentle ritual for a beautiful daughter, sister, friend.
My book about my pregnancy with Mary Rose is almost done. I hope to turn in the very final draft by the end of this week. Nora is a part of my book because her life touched my life in that special we-are-one-with-everything-in-the-universe way that the mystics speak of in different spiritual traditions. I used to be surprised by the synchronicity of my life, but now I just smile and say, Thank you. I am now friends with my Isaiah Promise mentor Cubby’s daughter, Mary Frances. I am friends with Laura, a woman I had seen at the Farmers Market when I was pregnant with Mary Rose. Everywhere I turn I am connected to others by beautiful threads of light.
It is not only the Hindus who say that life is a dream. My maternal grandmother used to say, Η ζωή είναι ένα όνειρο. Life is one dream. It won’t be long before we are all together with our loved ones on the other side of the veils. Until I meet you at the holy gate, Nora, please give Mary Rose and Cubby a hug from me and Mary Frances. Thank you for your far-reaching Light and presence in our lives.
Photos used with permission of Lauren Sample.
After the blessingway
roses fall from my hair
white and pink – in each room of the house.
We dreamt of this as girls:
flowers braided into our hair.
The artist paints with henna
on my swollen belly:
roses and dragonfly
my skin loose this second time.
My daughter is dying inside me
her heartbeat strong inside me
where she is safe until labor
my womb the sacred space
between worlds: dark and light
contracting for 21 days.
All that, to hold her for a moment,
her broken heart and defects
body limp in my embrace, her blue eyes
and me in this pool as it fills with blood.
I hold her to me and whisper We love you
We love you, We’ll always love you.
Go, I say, do your work, Sweet Baby.
The placenta is birthed and she slips away
so quietly I can’t know the exact moment.
I carry her body wrapped in a blanket with pink roses
for hours, hungry and exhausted, I don’t leave her
until that moment, the coffin on my bed.
Mother and I dress her in her christening gown
and lay her down, arms stiffening
The Master asks What now, Strong Woman?
Then answers Your milk will come in. You will awaken
for weeks listening for cries never made.
And the child? I reply The daughter?
The one I longed for for decades?
—She does not desire one drop of your milk.
With the angels I still weep and cry
Photo Credit: Sindy Strosahl
Tell people: A woman’s confidence and ability to give birth and to care for her baby are enhanced or diminished by every person who gives her care, and by the environments in which she gives birth. from Home/Birth: A Poemic by Arielle Greenberg and Rachel Zucker
I have two friends who say that they each know two babies who died at home because of a midwife. I’m not sure who these babies are and what the reality is. Babies die, though we like to pretend that they do not. They die in hospitals and they die at home, though thankfully most of our babies live and thrive. I chose to birth my babies at home and it still surprises me to watch people’s responses. Homebirth makes people uncomfortable. I believe that every woman has the right to make her own decision about where to birth. If I would have been better served in a hospital, I would have birthed there, but I preferred to be in a quiet place with lots of time to let my body do what it had to do as the gateway and entryway for my children’s lives.
Initially I thought that I had to have a hospital birth for Mary Rose because of her trisomy 18 “diagnosis.” I lost my footing after that life-changing ultrasound. My midwife decided to leave her practice and I was going to get to know the midwife, Grace, who would take over. My son wasn’t sleeping through the night. He woke me at least two times each night and refused to nap. I was already in a fog from exhaustion when the ultrasound technician tensed up and the lights went out and I had to feel my way step by step to get to the other side of the pregnancy.
After a “diagnosis” like trisomy 18 there are several doctors’ appointments. I went for an ultrasound of the heart because my daughter had a severe heart defect. The hospital wanted monthly ultrasounds, but we refused this monitoring. Not a week after our ultrasound we got a phone call from a peppy woman who was conducting a research study. She basically said I heard your baby has trisomy 18. I would like her blood which we can extrapolate from your blood. You’ll get a $25 Target gift card for your blood. No thank you.
From there we visited a kind pediatric cardiologist. I believe this doctor to be a man of faith, a man who got the big picture of life. He did not recommend surgery for Mary Rose even if she was born alive. He would work with us to give her some medicines to keep her comfortable but said that she probably would not live as long as three months in the best circumstances. The cardiologist cleared me for a home birth and wrote a letter saying as much. I visited again with the high risk OB/GYN towards the end of the second trimester and was told that I was not at any additional risk due to Mary Rose’s trisomy 18 “diagnosis.” Although she prefers a hospital setting, she did not object to a homebirth. We then visited a neonatologist who was kind, except for one thing. When he described the defects of trisomy 18, he said “she’ll probably look cute to you.” Babies with trisomy 18 are often described as elfin since they are small and have many defects including differently-shaped ears.
It was a whirlwind of information, not enough information, medical appointments, stress, and uncertainty. That range of stillborn through a few months made it difficult for me to prepare myself emotionally. I slowly got a few things ready. My sister sent me very few newborn clothes that my niece wore two years earlier. Isaiah’s Promise sent hand-made blankets and gifts. I had a baptismal gown ready, and how I hoped that Mary Rose would be baptized, not because of any sin she had, but because I wanted to welcome her into our faith with the sacrament. I got the pump out and bought bags to freeze milk. I bought a premie car seat in case we did end up at the hospital and she was too small for my son’s infant car seat. Every time I walked through Target or Babies R Us I wept and tried not to look at the pink cloud of baby clothes. I bought a few undershirts and pink socks. I vowed to do right by my daughter in life and in death. That meant buying a cemetery plot and a coffin, and deciding if we would put her on life support. My husband and I agreed that we would not extend her life briefly with machines. It did not feel right for our family, though I know families who choose differently.
I thought that we would be fine for our homebirth but there was a lot of drama with a nurse manager at pediatric hospice who thought that I wanted to kill my daughter because I didn’t want to put her on life support. She threatened my midwife telling her that the police could charge her with manslaughter if Mary Rose died at home. She turned our pediatrician against us discussing the legal ramifications of Mary Rose’s dying at home. (After checking with the neonatologist and the pediatric cardiologist, they confirmed that Mary Rose’s case was sealed tight with thorough records, that this would never happen.) The pediatrician was initially comfortable with coming to the house for a visit to diagnose Mary Rose with the trisomy 18, but then he would not come. This nurse manager even took the Do Not Resuscitate order (DNR) hostage. The pediatrician was supposed to mail it to me at home but she called him and made sure that he sent it to hospice instead and would not release it until I promised to birth in a hospital. I needed a DNR, a doctor willing to come to the house if she died before we could get to a specialist, and a licensed midwife. I prayed and hoped that these three pieces would come together. (In hindsight, neonatal hospice would have been more appropriate for our needs since pediatric hospice does not understand neonatal illnesses well.)
The tidal wave that hospice brought to my life after I already had things in place for a homebirth speaks to the way our society operates. There is a system in place and everyone is expected to follow it. A homebirth is unusual for most, and so is an infant with a neonatal and fatal illness. Pediatric hospice is very helpful when children are on life support and are facing death. The nurse who was so uncomfortable with my case was operating from a place of fear. She was afraid of homebirths. She thought that Mary Rose would suffer in her death which is not the case with newborn babies with trisomy 18. Instead of educating herself on neonatal illness, she went to war with me and used every pawn she could by trying to instill fear in the midwife and the pediatrician. The pediatrician bought into the fear of lawsuits. Thankfully the midwife, Grace, saw through it.
The controversy with homebirth is real but I am not writing a pro-homebirth piece here. I am writing to say that if a woman has birthed at home and wants to do so again, it is still an option. If a mother doesn’t want to ride the tide of the system, then she is on a raft battling the waves that are trying to take her with them. I was not prepared to have my daughter subjected to tests such as ultrasounds at birth. The hospital wanted her cord blood. And when she died she would have to go through the morgue. “What about religious Jews, Baha’is and Orthodox Christians?” I asked. What if your religion and belief is to take care of your own dead. No one knew anything about this. I wanted to prepare Mary Rose’s body for burial myself. The priest had the casket. We had the plot. I wanted her body released to me. No embalming. No refrigerator. My baby would go from my arms into the church. The doctor answered No exceptions. This has never come up before. We don’t know. We just don’t know.
I felt like I was asking permission to birth on the moon, to send my daughter’s body to the stars in a rocket. My wishes were simple. In the event that we only had a few minutes or a few hours or even a few days, I wanted to hold my daughter quietly and give her a peaceful life. I was not judging the current system, or telling others what to do. I wanted this simple thing for my daughter. I wanted my son to meet her and hold her. I wanted the peacefulness of home. On my 42nd birthday my son got sick, my back was completely out, my mother was coming in three more days to help us, and on this day I found out that I could not birth at home due to hospice’s interference. It was early July. I was exhausted emotionally and thought that we had already done the work to get to the end of a pregnancy to wait for the baby. We had a birth plan, lived a few minutes from the hospital, planned a funeral in utero, and were as ready for life or death as we would ever be. I agreed to the hospital birth so that the nurse could give me the signed DNR. Then I decided that there had to be another way.
We finally found a doctor who would come to the house to diagnose my baby or to pronounce her dead. A child cannot technically be diagnosed until she is born. We were all set except that I was having contractions for three weeks but not progressing into active labor. I was stuck. How could I go through labor only to bury my baby? What if she was severely deformed? Would I love her? Yes! Yes! I wanted to nest, but I couldn’t. I got distracted when my family visited to meet Mary Rose. She waited. They went home. August came as the contractions kept steady.
After Mary Rose was born I did some research and tried to find cases of homebirths for babies with trisomy 18. I only found one case in England. There were several women who started birthing at home but they ended up in the hospital when they did not dilate. And for me, if I had another midwife who was less experienced or afraid, I would not have been able to birth at home. Grace gently used natural ways to encourage labor when I stalled. Perhaps the placenta and baby with trisomy 18 defects do not give the body the proper signals. We have to consider the emotional response to our outcomes too. A woman in labor stands at the threshold of life and death. The soul is born and takes its first breath. It is a holy moment. I knew that Mary Rose would leave us. I hesitated. I did the best that I could.
I am grateful that I had several small miracles to allow me to birth my breech baby in a pool and hold her for the moments that were her life. She was barely breathing at birth and after the placenta was birthed she slipped away. Mary Rose was born under the painting “Healing Companion” surrounded by a quiet and profound love. Her birth was a visitation that transformed those few people who were present. The veil thinned and Mary Rose was born twice, once into our world and once into the next one where she is Light. She was not baptized, yet we were transfigured.
I am not telling my story because I want all women to give birth at home, and I respect the surgeons and hospital staff who help the babies who need them. However, for the mother who has known homebirths and who wants to birth a trisomy 18 or 13 baby at home, please know that it can be done with a willing midwife who is knowledgeable and experienced. The medicalization of birth is another story. Our high infant mortality rates and high mother mortality rates in the hospital setting can be discussed at another time. If you are called to walk through a pregnancy with a fatal “diagnosis” please make your own decision and allow for any possibilities. My midwife says she wants people to stop being afraid of these babies. They live the lives that they are given, and in their defects they teach us to be true to ourselves and our path. I told my sister that my experience with Mary Rose felt like my life was put in a centrifuge and when everything stopped spinning I couldn’t see anything in the same way anymore. Mary Rose focused me, broke me open to love more, to notice the yellow butterfly going by and the light coming through the pine tree. In our tiny fragment of time together, there was profound truth and mercy. These babies are holy wherever they are birthed.
Photo credit: Sindy Strosahl.