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.

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41 thoughts on “Homebirth and a Fatal “Diagnosis”

  1. Mindy Song

    I’m sorry for your loss and the difficulties you faced in order to get the peaceful home birth you wanted. It sounds like you made the absolute best of Mary Rose’s life. Thank you for sharing such a nuanced subject with grace. Your words are like a poem and they touched my heart. I had a homebirth 1.5 years ago and it was an experience I will never forget. Birthing is such a sacred process and you captured the beauty of it even within the loss you had to go through. Thank you for having the courage to speak about this topic. God bless you and your family.

    Reply
    1. DiannaWriter Post author

      Thank you so much for your kinds words. We are sisters in walking this path of holiness. Thank you for your prayers. Much Love to you… Dianna

      Reply
    2. Shelly

      Hi. Your story speaks to my heart. I too had a daughter with trisomy 18, which for various reasons remained undiagnosed during pregnancy. I too had planned a homebirth with her, but “risked out” of care when my midwife said she felt too small (she needed to feel about 5 1/2-6 lbs). We never knew why she was small, until she was born. Although along the way she had soft markers (one of them being choroid plexus cysts that were seen on ultrasound) for T18, so we knew what it was. We transferred care to a nurse midwife practice that delivered in the hospital at 35 weeks and had weekly monitoring set up. Anyways.. my end point being that if we had known, I still would have wanted a home birth, to welcome my daughter into this world as peacefully as possible, and to let her die when her body was ready to go, rather than the fear and rushing that happened. But that said, because the hospital intervened to keep her alive, we had 2 1/2 days with her, which were amazing for us. She died peacefully in my arms when we removed the breathing tube. We had the experience we needed. I so appreciate your story, and it gives me the idea of how women can advocate for the birth they want, and that it might not be an easy road! Thank you for sharing. Much love to you and yours!

      Reply
      1. DiannaWriter Post author

        Thank you for sharing your story. Two and a half days is a miracle! Sending blessings to you and your angel baby…

        Reply
  2. Aniela

    “She rose up into the shadowing mercy of God and was plunged in an ocean of light. Unto her be salutations and praise, compassion and glory. May God make sweet her resting-place with the outpourings of His heavenly mercy…”
    – Baha’i Holy Writings

    Reply
  3. Lauren

    Dianna, your story touched me deeply, as I too am a mom who chose homebirths for prior babies, and planned one for my daughter Nora, who has Trisomy 18, and was born at home in 2000. Almost every word of your thought process after diagnosis echoed the ones I had during my pregnancy, though we were very, very fortunate to have a supportive team and not fall into the nightmare scenario you describe of having to battle to give your daughter a peaceful life, however short. My heart is with you as you grieve the absence of beloved Mary Rose in your arms and home. Blessed was she to have a mother who understood the gift of a gentle welcoming and goodbye. It sounds like you did your very best against unfair and terrible adversity…I don’t know where you found the strength to keep advocating for her. I’ll be keeping you and your family in thoughts and prayers, and would be honored to hear your birth story if you want to share more privately. As you continue to tell your story, you may want to look into the National Home Funeral Alliance, which has good resources for people wanting to go beyond hospice to home death care, and can sometimes help families with information/resources that doctors and hospice workers don’t have that help allay fears about liability.

    Reply
    1. DiannaWriter Post author

      Thank you for your kind words, Lauren. I am so glad to meet you virtually and to hear of your home birth with your daughter, Nora. I am keenly aware that there will always be the empty space where my daughter’s body was, and that I will always long to be with her. I also know that her spirit lives on and feel her urging me to write this book and offer our story as comfort to others. Please see my Facebook page Walking the Labyrinth of My Heart, where I also post some other helpful and insightful quotes and stories if that is something that you are interested in. Thank you so much for your support, prayers and love. Many Blessings, Dianna

      Reply
  4. Nicole Angela

    Dear mama,
    Thank you for sharing your story. Your ability to live your choice is inspirational. Your daughter now shines for us all to feel, as she has transformed you…so to does she transform us.

    With love,
    Nicole Angela

    Reply
  5. Lynne

    You are a courageous woman and your courage, faith and persistence allowed your precious daughter to be born and to die in your arms, at home, with family. As an RN of 40 years, I completely understand the desire to avoid the medicalization of birth which removes your desires and is replaced by the authorities–doctors, nurses, lab tests, IVs and in your case your daughter would likely have been placed on life support. Kudos for you for your persistence and to your midwife for standing with you. I’m so sorry for your loss.

    Reply
    1. DiannaWriter Post author

      Thank you for your support and your condolences. There is a place for hospitals and medicine, but not all births all the time. Many blessings to you in your work as a nurse…

      Reply
  6. SisterCreature

    Thank you for this beautiful, moving story. The system has overgrown itself to the point that it usurps the simplest, most profound aspects of being human and ruins them with red tape. I am so glad for you and for Mary Rose that you had the birth you desired for her and that her birth and passing were as unimpeded and peaceful as could be. Your acts of independent thinking are truly courageous!

    Reply
    1. DiannaWriter Post author

      Thank you for your kind words. It was a difficult journey and the advocacy was exhausting. I am so lucky to have had such amazing support from the midwives and doulas. Many blessings and love to you…

      Reply
  7. Natalie

    Thank you for sharing your story Dianna. I had my baby with T18 (stillborn) at the hospital and now, 4 years later I find myself studying midwifery and very passionate about one day working in the amazing world of home birth. Although I was not passionate about home birthing 4 years ago, and have not had any of my 4 living children born at home either, I often think nowadays how different and more beautiful and precious my Sebastian’s birth would have been in the comfort and sacredness of our own home. His birth was not bad, but it wasn’t special either. It would have been amazing to have him at home, with my family around, just to have said we brought him home. He is home with our Lord now, but still, I wish my passion was strong back then.
    Blessings to you for sharing and for your precious Mary Rose… through her amazing mother she will touch many lives even without being here. Love to you xx

    Reply
    1. DiannaWriter Post author

      Thank you for sharing your story. I will include Sebastian in my acknowledgements for the book with the other babies with trisomy 18 whom I have met through their families. He is holy, and his birth was good. He was already born into the other worlds. Studying midwifery with your experience in birthing a stillborn will give you a different perspective and a sensitivity that is so important. My midwives were/are amazing. I also had a bereavement doula with me. Once a woman experiences and holds a dead baby the world looks different, certainly more fragile and life looks more fleeting. I send you blessing and love on your path… Dianna

      Reply
  8. Catherine

    wow…your words have touched me deeply. I am so sorry for your loss.
    Having experienced both a hospital and a homebirth, I know I would want to make the same choice you made, and I’ve often wondered what would happen from the “system’s” point of view. What a struggle! When you’re already dealing with losing your child.
    You share with such grace and strength. And your last few sentences, about the effect of your time together just made me cry.
    I am so glad you had the experience of a true Midwife, your Grace…(apt name too!) who was able to support you! There are very few of these extraordinary women in the world!
    Thank you for sharing this story.xxx

    Reply
    1. DiannaWriter Post author

      Thank you for your kind words and condolences, Catherine. Grace is an extraordinary woman who taught me to embrace my baby as she is. Between her and my Isaiah’s Promise mentor, Cubby, I was able to treasure the moments that I had with my baby girl. Much Love to you…

      Reply
  9. Linda Quinton

    I am sorry that you had to fight to give your precious girl the life she deserved. I see the contrast between being born under lights with strangers and possibly being pulled away from her mummy’s arms to be ‘assisted’, and being born peacefully at home to feel the peace and calm and warmth of her mummy’s arms for total of the short time she was here earthside. Every baby deserves to feel that security, and you made sure that happened xx

    Reply
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  11. brenda

    Dianna, Deep gratitude for your sharing of your experience and love for your daughter. Giving voice to your journey is supporting so many other families, may this also be healing for you.
    I serve my community as a homebirth midwife and your words brought me to my heart memories of baby Susan. Ten years ago, in a few weeks, a wonderful couple welcomed their daughter into the world and embracing arms, Susan had Trisomy 18.. They also chose to birth again at home, baby Susan was also breech.
    One of the treasured moments for this mama was when she spoke to ask a questions and baby Susan turned and looked directly into her mama’s loving eyes. A moment of recognition, a treasured gift to this family that will last their life times and mine.
    Xoxoxoxoxoxo,
    Brenda

    Reply
    1. DiannaWriter Post author

      Thank you for sharing Susan’s story and life. We keep these babies alive that way. We had a similar moment. Our midwife looked at Mary Rose and said “Baby Girl, open your eyes for your mama.” And she opened them up and turned her head and looked right at me. Her muscle tone was so weak, that it felt like a miracle. Much love to you and your blessed clients.

      Reply
  12. Kris

    Thank you for sharing the beautiful story of your daughter. I am a pediatric nurse and worked in pediatric icu’s in my younger years. I was so touched by your acceptance of your daughter’s life and death.

    Reply
  13. Deb

    This is so beautiful. I’m so sorry you lost your daughter but for her to be held by someone who loved her as she slipped away is the most beautiful gift you could have given her. Thank you for sharing your story.

    Reply
  14. Beth

    Dianna
    Thank you for sharing your story of grace, courage, and greatest of love. I feel your experience represents the broader picture of a blessed life that can be all of ours depending on our ability to be aware of the true gifts of living. Birthing is one of those human processes that has been perpetually stripped of the strength that it provides for women and families…you did the ultimate protection of your daughter by defending your decision and way of birth. May you experience a sense of peace.

    Reply
  15. Coleen

    I really can’t remember what brought me to your page. I’m so thankful for it though. I admire your courage when the road is difficult. I resigned myself to opinions and pressures many times and I’m so glad you didn’t. I am trying to give my daughters their own voice in their choices and the majority have experienced home births despite pressures to use hospitals. I’ve repeatedly told my daughters to do what they think is right in spite pressures of those who “know” better. You have an uncommon discerning spirit and I pray it continues to lead and direct your life. You have more people praying for you than you know.

    Reply
  16. Merry-Lynn Sheetz

    Thank you for sharing your beautiful story. 41 years ago, I gave birth, in a hospital, to my son, Joshua Michael, was born and immediately passed; I only got a glimpse of him…never got to hold him. Mothers didn’t have any rights; they did what they thought best for the mother. I’m so happy that you were able to deliver your precious gift in the manner you choose, and let her go back to God the way she did. Blessings to you and your family.

    Reply
    1. DiannaWriter Post author

      Thank you for sharing your story and for your kind words. May Joshua Michael’s memory be eternal! You are both in my heart.

      Reply
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  18. Ari

    I’m so glad that I found this. My husband and I are expecting a baby with a terminal diagnosis. We have been planning to have her at home. We learned tonight about needing a physician’s referral after birth and that hospice is not able to call time of death without that. We’re not really sure where to go from here.

    Reply

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