Category Archives: Neonatal Life Support

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

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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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.

Homebirth and a Fatal “Diagnosis”

IMG_0011Tell 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.

It’s Not Your Business: A Discussion of Abortion and Neonatal Life Support

free-vector-mothers-silhouette-02-vector_026828_Pregnancy%20(2)I heard the poet Claribel Alegria speak at The Resilience of the Human Spirit Conference in 2006. She said that everything we do is political. During my pregnancy with Mary Rose I recalled her words often. Choosing to carry my daughter to term after testing revealed that she had trisomy 18 disturbed people and my pregnant body became a part of public discourse. Not too many people know that their baby will die while pregnant, and though I am pro-choice politically, I am also a private person who still does not understand why people freely gave me advice on two decisions that most have no experience making: abortion and neonatal life support.

A few Christian friends suggested abortion, and this surprised me. Did it surprise me because they were talking and posting on Facebook about “The Lord?” or was it because I thought that my decision to carry my baby was private? I would never tell my very closest friends what to do with a pregnancy. What made it okay for acquaintances to tell me what to do with my pregnancy? Or for friends to advise my mother after liturgy that abortion was the best choice for me?

It was appropriate for the doctors and genetic counselor to offer me the choice of abortion. When I said no, that was it, probably because I live in the south and Christianity is the mainstream culture here. I know other mothers are pressured into aborting their babies and have a hard time finding doctors who will work with them to carry their pregnancies to term. I know that some parents of trisomy 18 babies can’t find doctors to treat their children because they are deemed “incompatible with life.” It seems that no matter what we do there are challenges. We have to be our own advocates or we will get lost in the system. I did a few things that were not expected. I carried my baby to term, birthed her at home, and did not have her body taken away to a funeral home. I simply refused those options, even though they might have been easier choices.

I can’t imagine that abortion is an easy decision though. There is still a loss. When I was mourning after my baby died, post-partum hormones raging, I knew that some people thought I wouldn’t be going through this if I had terminated my pregnancy. It’s not so simple. I know women who have had abortions and they are still dealing with their choice years later, just as I will always walk my path with the consequences of my choice to birth and bury my newborn.

I was childless for 15 years, not by choice. In that decade and a half I wanted to be pregnant. I wanted a child of my own with every cell of my body. I knew that I could not terminate a pregnancy regardless of the child’s outcomes even when a child was an abstract wish far off in the future. I first felt Mary Rose move in the genetic counselor’s office as she was asking me if I would have an abortion. I firmly stated, “No.” I wished for a child and I had a child. I knew that there would probably be no holidays, no milestones, not much time. Babies with trisomy 18 have a range of possibility. Fifty percent are born still and most die within the first hours, days and weeks. Under 5% live to their first birthdays and most of these are on life support.

My husband and I agreed that we would not terminate the pregnancy and then decided that we did not want life support for our newborn. If our baby could not breathe on her own, could not eat, or suck, we wanted to hold the space to honor her peaceful death. We were making these intense decisions with our neonatologist, midwife and priest and then someone would say “You didn’t have an abortion?” What gave us away? The fact that I was seven, then eight, then nine months pregnant. I had one question: Why is this any of your business?

The decision to carry a child with a fatal illness to term or not, to choose life support for an unborn baby or not, to plan a funeral instead of readying a nursery, these are all private decisions. For those who feel that they should weigh in, let me stop you here. If a couple asks “What should we do?” then it is appropriate to give advice. In our case we never asked anyone for advice, except for our midwife, Mary Rose’s doctors, and our priest. We wanted to be sure that our decisions were ethical, that we were not denying our daughter anything as her parents. But life is life. She would either breathe on her own, or she would not. She would either eat, or not. And in our daughter’s case she did none of these things.

For people who don’t know what to say, say less. The comments I appreciated the most were “I don’t understand what you are going through, but I’m here for you.” That says I love you, but I won’t boss you around. It is somewhat comical the way people dispensed advice. One mother told me “I wouldn’t do anything. Just wait and believe that God will heal your baby. Do you pray? Do you believe in miracles?” That’s a great way to kick a woman already on her knees further down. I believe in miracles, but I also believe in accepting God’s will. I had carried a healthy child to term and I knew that my daughter’s body was not developing normally. If I had listened to this woman what would we have done with Mary Rose’s body? We had already purchased a plot and had a casket for the burial. She was buried within 26 hours of birth. I couldn’t exactly wait to see what would play out when the tests were 99.8% accurate.

The sweet baby, Grace Miriam, whom I mentioned in a previous post has full trisomy 18, spina bifida and hydrocephalus. Most people would have aborted Grace, but her parents, who are devout Catholics, carried Grace to term. She is alive and breathes on her own. Grace has survived surgery on her spine and surgery to place a shunt in her brain. A priest friend told Grace’s father that they should consider their time with Grace as Holy Hours. I am so grateful that our Creator “use[s] the foolish things of this world.” Grace is alive. We see life in the fragmentation of our individual lives, but what about the bigger picture of one, connected, pulsing Universe? How many lives is Grace touching? Why do humans think that one life is more valuable than another?

I think back on my pregnancy with Mary Rose and remember feeling so vulnerable and alone. May I suggest that if your friend or sister or cousin has had a troubling ultrasound or a miscarriage, that you offer her a box of tissues and a cup of tea? A hug. Shared tears. Unless you have ever been “diagnosed” with a pregnancy that is considered fatal, don’t offer advice. You really don’t know what you would do. Even my friend, Miko, whose son, Josh, died as an adult in a car accident agrees that she couldn’t give me advice on the pregnancy. You can’t know until you are standing there, hands on your belly, at the crossroads, feeling your child move, loving her no matter what.