Written by Annie Parson
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 sometimes die, though we like to pretend that this never happens. 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. Home birth makes many 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 on earth.
Initially I thought that I had to have a hospital birth for my daughter, Lori Brown, who was “diagnosed” with trisomy 18 during my pregnancy. (Babies cannot technically be diagnosed until after they are born, but bloodwork is over 99% accurate.) I lost my footing after that life-changing ultrasound at the midpoint of the pregnancy. My midwife decided to leave her practice and I was going to meet the midwife, Grace, who would take over. My two-year-old 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 of exhaustion when the ultrasound technician tensed up and left to get the doctor.
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 identifying herself with the hospital who was conducting a research study. She basically said, I heard that 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. No thank you.
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.
From there we visited a kind pediatric cardiologist, who gets the big picture of life. He did not recommend surgery for Lori Brown even if she was born alive. He would work with us to give her medicine to keep her comfortable, but he said that she probably would not live as long as three months in the best of 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 Lori Brown’s trisomy 18. Although the doctor prefers a hospital setting, she did not object to a home birth. 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 deformed ears. I felt stunned in that moment and afraid of how my daughter would look. The doctor’s words reminded me how different my child would be from healthy, thriving newborns.
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 Lori Brown would leave us. I hesitated.
I did the best that I could.
It was a whirlwind of information, not enough information, medical appointments, stress, and uncertainty. It was 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, a nonprofit organization that supports families carrying to term after a fatal or life-threatening prenatal diagnosis, sent hand-made blankets and gifts. I had a baptismal gown ready, and how I hoped that Lori Brown 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 preemie car seat in case we did end up at the hospital and Lori Brown was too small for my son’s infant car seat. Every time I walked through Target, 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 other families choose differently.
I thought that we would be fine for our home birth, 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 Lori Brown died at home. She turned our pediatrician against us discussing the legal ramifications of Lori Brown’s dying at home. (After checking with the neonatologist and the pediatric cardiologist, they confirmed that Lori Brown’s case was sealed tight with thorough records. There would be no legal issues given the trisomy 18 diagnosis.) The pediatrician was initially comfortable coming to the house for a visit to diagnose Lori Brown with 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. She 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 my baby 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.
Lori Brown focused me, broke me open to love more.
In our tiny fragment of time together, there was profound truth and mercy.
The tidal wave that hospice brought to my life after I already had things in place for a home birth speaks to the way our society operates. There is a system in place, and everyone is expected to follow it. A home birth is unusual for most, and so is an infant with a neonatal illness. Pediatric hospice is very helpful when children are on life support and are facing death. The nurse, who was uncomfortable with my case, was operating from a place of fear. She was afraid of home births. She thought that Lori Brown 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 our midwife, Grace, saw through it.
The controversy with home birth is real but I am not writing a pro-home birth 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. I was not prepared to have my daughter subjected to tests at birth. The hospital wanted her cord blood. And when she died, she would have to go through the morgue. What about religious Jews, Bahá’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 Lori Brown’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 forty second birthday my son got sick, my back was completely out, my mother was coming in three more days to help, and on this day I found out that I could not birth at home due to hospice’s interference. It was early July. We had a birth plan, lived a few minutes from a 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 would 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. 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 Lori Brown. She waited. They went home. August came as the contractions kept steady.
“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.”
Arielle Greenberg and Rachel Zucker
After Lori Brown was born, I did some research and tried to find cases of home births 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 my body stalled. Perhaps the placenta and baby with trisomy 18 do not give the body the proper signals.
We have to consider the emotional response to a fatal diagnosis 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 Lori Brown 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 at home 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. Lori Brown was born under the painting that my friend made of us, “Healing Companion,” surrounded by a quiet and profound love. Her birth was a visitation that transformed those few people who were present. Lori Brown 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 home births and who wants to birth a baby with trisomy 18 or 13 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 possibility.
My midwife says that 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 Lori Brown felt like I was put into a centrifuge and, when everything stopped spinning, I wasn’t the same person anymore. I couldn’t see life in the same way anymore. Lori Brown 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.
Name of midwife has been changed.
Adapted from Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief & Infant Death published by White Flowers Press.
In honor of National Pregnancy and Infant Loss Awareness Month, White Flowers Press is offering a discount on the e-book Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Infant Death for the week of October 15th-22nd through amazon.com
Annie Parson is a writer, teacher, workshop facilitator and poetry therapist. Her book Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Infant Death is published by White Flowers Press. Dianna’s pregnancy with her daughter, Lori Brown, who died an hour after birth of trisomy 18, changed her life completely. 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.
Author: Theresa Gilmore
Theresa Gilmore is Owner, Editor, and Publisher of Holistic Parenting Magazine. Theresa Gilmore is married to her soulmate and together they parent six delightfully vibrant children in the Colorado Rockies. She has a background in sociology and philosophy, and has enjoyed working as a birth doula and breastfeeding counselor for over a decade. She has founded and led several women’s groups, on a spectrum of communities and interests. Theresa Gilmore is an advocate for authentic, intuitive parenting. She considers herself a cheerleader of her six life learners. She is passionate about holistic parenting, and loves sharing inspiration with like minded people across the globe.