During pregnancy: Informed consent starts with information

• Inform & Educate—Inform all patients stillbirth is a possibility. Use matter-of-fact statements and real statistics. Talk about stillbirth the same way you talk about Shaken Baby Syndrome and SIDS
  • If a pregnant patient wishes to discuss risk with you, do so honestly, in as much detail as they desire. Do not dismiss their concerns; you will only send them to Dr. Google
  • If a patient is at particular risk for stillbirth or other difficult outcome, ensure they understand what that means. Do not reassure them that “everything will be fine”, especially when higher risk exists. DO discuss specific risks, & actions they can take to be on guard and/or mitigate them
• Informed Consent—If a patient chooses to continue a pregnancy post-term, or to refuse a procedure that could increase risk of stillbirth, ensure they are aware of the numerical and specific risk; inform with hard numbers, and without fear
• Movements Matter—Educate your patients about the importance of kick counts. Read up on recent changes in Australia and the UK regarding tracking each baby’s individual pattern of movement instead of arbitrary numbers. Emphasize that each pregnancy is unique and should not be compared to other pregnancies, even for the same woman
• Eliminate Myths—Ensure your patients understand that babies never run out of room in the womb; movements change in type, but not in frequency
• Dangers of Dopplers—Talk to your patients about not relying on home dopplers for reassurance. Discourage patients from purchasing or using home dopplers
• Warning signs—Educate your patients on warning signs of stillbirth: marked decrease or increase in movements; any period of especially intense activity outside of the norm for that pregnancy; intense itching, particularly on but not limited to the hands and feet; sharp pain in upper right quadrant/under ribs; intense headache; swelling, especially intense swelling of hands and/or face
• Be available—Encourage patients to call you and/or go to L&D anytime they feel something could be wrong, even if they come in daily. Let them know they are never a bother

For the hospital/birthing center:

• Resources—Make contact with all local organizations providing memory or comfort boxes. Ensure all personnel are aware of the location of these boxes, and how to request more
• Cuddle Cot—If you have a cuddle cot, ensure all personnel are aware of its location and how to use. If you do not have a cuddle cot, consider requesting or holding a fundraiser to purchase one
• Training—Ensure all staff members are trained on appropriate procedures for stillbirth or perinatal loss
• Limited Personnel—Whenever possible, minimize the number of staff members who work with a bereaved family. This allows parents to become comfortable with providers and not have to explain or answer questions multiple times

If a stillbirth should occur:

• Be empathetic—Understand this is a traumatic & confusing time in your patient’s life, possibly/ probably their worst moment ever. Be prepared to speak slowly, proceed slowly, and repeat things if necessary. Whenever medically possible, give the patient time to process before pushing any procedures
• Ask for and refer to the child(ren) by name
• Provide Information—Inform your patient and/or their support person of all medical options. Discuss methods of induction and availability of a C-section if desired
• Follow Birth Preferences—To the extent medically possible, allow the birth parent to follow the original birth plan, and/or ascertain their current wishes for the birth. Do not assume the birth parent wants a fully medicated or “easy” birth, and if you offer anxiety medication, ensure the birth parent is aware of the effects it will have on memory
• Options for Memories & Memorabilia—Ensure patients are aware of all options to preserve memories and memorabilia, to include: Now I Lay Me Down to Sleep / other forms of birth photography; hand and footprints; hand and foot imprints; locks of hair; preservation of breast milk through breast milk jewelry; hospital memory boxes; any other items as appropriate
  • Bathing/Dressing—Offer parents the option to hold, bathe, and dress baby, and the option to leave the child dressed upon departure from the hospital. Should they choose this option, ensure they receive these clothes at a later date
  • Religious Observances—Offer the ability to observe any personal religious ceremonies such as baptism or blessing
  • Time—Allow/encourage parents to spend as much time as they wish with the child(ren), and do not pressure them to leave before they are ready. If available, offer the use of a cuddle cot in the hospital and/or at home. Ensure parents are aware they can also visit at the funeral home
  • Physical Items—Keep or offer to keep all physical mementos possible: measuring tapes, blankets, ankle bracelets, etc. Keep even & especially if stained with the child’s blood
  • Discuss Options for Breastmilk—Ensure the birthing parent is informed of the choice to either stop breastmilk or to express and donate it. Do not assume every patient wants to stop their milk

After discharge:

• Follow up—Follow up with the patient regularly. If possible, schedule a check-up within the first few days of discharge. Offer to and attend the funeral
• Be available—Be available to meet with your patient as often as they need it
• Listen—If your patient wants to talk to you about their feelings, listen. You are the face they are most familiar with, and they may want to talk to you before seeing a counselor, therapist, or support group
• Offer Additional Support—Referral to an MFM, discussion of autopsy results, referral to a grief therapist or support group, other medical services as appropriate. Understand many patients will not be ready to utilize these services in the beginning; offer again in a few weeks and/or months

In general:

• Understanding—Understand what it’s like to experience a stillbirth or perinatal loss, both physically & emotionally. If you don’t have personal experience, read books/blogs, or speak with bereaved parents
• Be a resource—Be aware of support groups and resources for bereaved parents in your area
  Support the whole family—Ensure the father/second parent/other family members also receive support
• Use plain language—“Stillbirth” is not a dirty word. Use plain words like “stillbirth” and “death”
• Use caution:
  • With religion—Do not assume religious beliefs or discuss religious concepts unless the parent(s) have done so first. This includes use of the word “angel” when referring to the deceased child. If you follow a personal faith, request permission before praying/offering to pray
  • With concepts like guilt, fault, and blame—While some patients will want to be told the death is not their fault, others will feel alienated by those words. Allow the patient to steer the conversation in this area
  • When talking about subsequent children—Some parents will want to discuss this right away, but some will not. Avoid phrases like “try again”; instead, say “try for a second/another child”. Similarly, avoid terms like “rainbow baby” unless the parent(s) have used it first
  • When dealing with an “early” loss—Regardless of the legal definition of miscarriage vs. stillbirth, ensure all bereaved parents are supported in every way they need. All parents should be offered support and the option for memorabilia, to include photos, and all parents should be able to select a means of disposition for their child’s remains

***Regardless of past experience and everything written here, each individual case is specific
and unique. Where conflict exists between these instructions and patient desires, always allow the
patient freedom to choose. They will be your guide in providing the care they need***

~
A PDF version of this post is available here: Requests of a Bereaved Mother for Prenatal Providers.

June 22nd, 2017 – Adrian’s due date. Because I was inseminated, we knew exactly when Adrian was “due”. I also knew due dates were estimates. Many first times moms deliver more than a week late. I had some brief thoughts about Adrian being a 4th of July baby.

Although I planned for a midwife-assisted natural childbirth, I had actually established concurrent care with a “traditional” PA/OB practice as well. And because at 35 years old, I was considered advanced maternal age, every week of my ninth month, I would go to the testing suite in labor and delivery.

Non-stress testing never scared me. They only put monitor straps on my belly to check for contractions, to monitor my son. None of it was invasive, though Adrian always kicked at the straps as soon as they were applied. They saw this as a good thing. They were looking for two such spurts of activity each time we went in.

That last visit, on the morning of my due date, Adrian again “performed” to expectations. I told my sister it was funny, almost like he knew he was being evaluated. But part of the visit was checking on me, and when they took my blood pressure, it was elevated.

I look back on this visit, and I feel So Much Anger. I was obviously swollen, my feet so huge I was down to one pair of flip-flops. I was nauseated. And my blood pressure wasn’t just high for me; it was also only a few points below the threshold marking stage 2 hypertension. All of this pointed to preeclampsia. And nobody said a word.

I look back on this visit, and I wonder — at how many points could this have gone differently? I did all the right things! I went to all of my appointments. I asked SO many questions: I read ALL the books. And yes, the nurse in the testing room pushed for induction, but she never told me why. And when I told her I wanted to let labor happen naturally, she sent me home. She didn’t think to tell me my baby could die.

June 22nd means so many things to me. It was my due date. It was the phrase I used when I registered an email address so I could start writing to my son. It was one of many dates my son could have been saved. It was seven days before he died.

My water broke in a gushing flood. I understood then what women meant when they said it felt like peeing. I looked down, expecting to see water pooling on the tile floor. What I saw instead was blood.

That moment woke me, brought me back to physical reality. I thought about what the blood could mean. I wondered briefly if I was dying.

I got caught up in the details, then. I called the hospital, while my sister ran for towels and a dress we could fit over my head. My grief was swallowed up in movement and the placement of trash bags on the passenger seat.

We drove to the hospital, through traffic that was unusual for eight o’clock at night. I clutched a makeshift diaper of towels, feeling the loss of more fluid with every turn.

My sister pulled up to the curb, in haunting parallel to our appointment that morning. Someone on the sidewalk brought a wheelchair and asked if he could pray for me. He held my hands. My mind hovered over us. It still wasn’t real.

Early & Active Labor

Upstairs, I met my nurse for the evening, a sweet and well-organized woman who asked for my birth plan. She discussed the protocol the hospital uses for stillbirth deliveries — my choice of pain medication, unlimited food and liquid, and a personal nurse on every shift.

The doctor followed. He confirmed I was in labor. He had wanted to perform an amniocentesis, but I had lost so much fluid they weren’t able to position the needle. The nurse took more blood and put a saline lock above my wrist, but did not yet connect any fluids. When I told her I wanted to labor naturally as long as possible, she brought me a birthing ball and mentioned that the shower was available in my restroom.

Beth* had returned with my original doula, and together they set up soothing music and an aromatherapy diffuser. When I was originally planning for birth, I had requested “massage”-type music — the wordless, instrumental filler that facilitates relaxation. I had also requested specific scents. It felt both weird and also comforting that these things were still going according to plan.

For the first few hours, I rocked on the birthing ball, starting to feel the contractions in my belly and lower back. They weren’t painful at first, just present. I breathed into them the way I was taught. My sister and my doulas took turns talking, idle chatter to fill the void. If I could shut off the screaming part of my brain, I could almost pretend it was ordinary.

Although I was in natural labor, I wasn’t progressing quickly, and by midnight, I had only dilated 2 1/2 cm. I knew because my water had broken, there were increased risks of infection; long labors can be dangerous in these cases. After discussion, I accepted assistance via IV Pitocin.

Afterwards, my contractions became stronger, and also more irregular. I clung to my Bradley training, first breathing, and then moaning through them. My doulas took turns rubbing my back and my feet, and continued talking to me. I was physically present, but mentally gone, my consciousness living mostly in my physical body.

Transition

When I entered Transition, I started to feel the vibrations of the contractions in the bones of my pelvis. They were still irregular, coming in intervals of 2-5 minutes. I also felt nauseated. I think under different circumstances I would have continued to work through the pain, but in the early hours of the morning, I decided it was too much. I asked for the epidural.

The anesthesiologist worked calmly but quickly, allowing me to moan through each contraction before she continued. Afterwards, she tested the efficacy, and seemed satisfied that the pain was beginning to dull. I had requested a lower dose than usual, but the relief was very welcome. I slept for about an hour.

With the lower dose, I appreciated being able to feel each contraction, but without the intense sensations I felt at the start of Transition. We passed the morning in conversation, my doulas playing music and rubbing my feet, and my sister telling stories from our childhoods. By 11am, I was fully dilated and ready to push.

Second Stage

The doctor on duty talked me through pushing for a few contractions, with little progress. Despite the sleep that morning, I was feeling a little loopy and also feverish. The doctor left and I asked if the midwife was available. She wasn’t scheduled until 2pm, but I think she may have come in early for me.

I pushed for four hours. We tried multiple positions and techniques, but the greatest progress came when I realized what it meant to push. That was also when I was most tired. At one point, I tried to roll onto my side to relieve the pressure on my back and hips, but the movement ignited a fire in my old pubic bone injury. I believe that was the only time I screamed.

Towards the end, the nausea returned. I asked for Sprite, sipped out of a straw between contractions. I also experienced intense hot flashes, struggling to hold my upper body still enough to keep the multiple ice packs in place. I felt like I was burning from within.

With each contraction, I put my legs into the air, knees bent. If I faltered, hands were there, holding me steady, wiping my brow. I never felt like I was alone.

When I thought I was spent, the midwife told me to keep going. I could feel my son’s head in my pelvis, an unbearable ache. I pushed a fifth time through that contraction and heard her say his head was free. I pushed again, contractionless, and his body followed.

I lay back, exhausted. She had warned me, but I ached to hear him cry. It was the loudest silence I’d ever heard.

She took him away to be cleaned with soft blankets, careful not to tear his tender skin, then she returned to me. Something was wrong.

Third Stage

I came back to myself and heard the midwife asking for the anesthesiologist. She said I needed drugs — a lot — and now. I didn’t understand the whirlwind around me. I still don’t know what caused her to worry, but the anesthesiologist did not arrive in time. The midwife reached inside of me and pulled, releasing the last of my placenta and removing it. It wasn’t an easy process, and I begged her repeatedly to stop. In many ways, it was worse than the birth.

Afterwards, she apologized. I wonder now if I was hemorrhaging? I wonder now if she saved my life? We never talked about it again. I still don’t know.

She pushed on my belly to expel more fluid and added antibiotics to my saline drip. I think I slept briefly.

After the Birth

The midwife returned to my side. I opened my eyes and saw my son. He was wrapped in a white knit blanket with a matching cap. I unwrapped the bundle, exploring his newborn skin. He was so recently dead. He looked like he was sleeping. It was the first moment I knew that “he” was a he.

The photographer had come in after the birth, had set up unobtrusively for photos. She captured these first moments, my explorations and his perfect nose. She captured everything.

After the first photos, the nurses dressed him in his first real clothes. The two newborn outfits I had brought were both too small for him, but they cut a slit up the back of a onesie and put it on him anyway.

I spent the next 24 hours with my son. I think that before his death, I would have thought this strange. I don’t think it’s at all possible to understand the importance of those first moments until you have lived them. He was beautiful. He was perfect. Even in death, he was still my everything.

I sat with my son, holding and singing to him, telling him stories. He still looked so much like a living child, fast asleep.

Before I left the hospital, I asked if I could leave him in his clothes. I couldn’t stand the thought of leaving him naked. It wasn’t standard, but they let me do it. The nurses and staff were truly amazing.

When it was time to leave, I placed him back in the bassinet, kissed his forehead, and told him if he was still present, that he could go. I promised him I would be okay. I don’t know if I will ever be okay.

~
* Names have been changed to protect privacy.

I had a pre-scheduled non-stress test appointment the morning my son died. My sister drove me to the hospital, dropping me at the front door while she parked. I walked in, feeling “funny”, but still not anticipating the words I was about to hear, the words that didn’t yet exist in my vocabulary.

The nurses, by this time all familiar with me, said, “Hello.” One led me to a bed. It was crowded that morning and I took the last one available. We made small talk. I told her he had been quiet that day, but that I felt him moving in the car. I thought I had.

When she couldn’t find a heartbeat with the doppler, I think the idea started to form in my head, but I wasn’t quite ready. She led me across the room to the ultrasound machine. When she brought up the image and my baby wasn’t moving, I asked if there was a problem. She excused herself and said she would return shortly.

Within moments, the attending doctor was at my side, his face that carefully neutral shade of controlled calm. He put the wand to my stomach and my heart started racing. My hands covered my face. I both knew and I didn’t.

I’ve written about this moment several times since that day. It is an ever-present memory; I will take it to my grave. I remember the doctor’s face as he said the words, “I’m sorry.” My next memory is of someone screaming. It was me.

They got me to stand up and walked me down the hallway. I was surrounded by people, wishing they would carry me. I remember two doors, and the hospital gown folded neatly on the edge of the bed. Was this really happening? Was I expected to give birth to him?

I sat down on the bed, someone still holding me. I stopped saying “no,” but the tears were never-ending. I still felt him moving. It was the movement of his dead body.

They let my sister in the room. She replaced the woman by my side. She held me, murmuring, told me that she loved me. She gave me strength when I wanted to die.

The doctor returned, glanced briefly at the hospital gown. No one ever asked me to put it on. He offered a second ultrasound. I needed the confirmation. It was still impossible to believe my child was gone.

My sister called my doula. She had recently moved to a different city, and I was her last client. She started driving right away, but also called someone else from her service while we were waiting.

I remember my sister’s voice for what felt like hours, slow and soothing wrapped around nonsense stories like I had asked her to tell me when I was in labor. I remember her arms stroking my back, and how I was able to just feel and drift.

I remember feeling like my pain would never end.

Someone asked if there was a staff member I would like to see for the delivery. Although this was a “traditional” hospital, they did have a handful of midwives on staff. I requested the one who had seen me for contractions at 34 weeks. I liked her spirit.

The “new” doula, Beth*, arrived. We had never met, but I liked her almost immediately. I asked her about my options; “what happens next?” I needed to hear it from someone with no relation to the hospital. I needed to know all of the possibilities. We talked about methods of induction. I realized I did want to go through with a vaginal delivery. It was important to me.

The doctor returned and repeated the options. We decided I would go home and return that evening for overnight induction via catheter. The midwife also came by. She sat by my bedside and talked to me, and something in her voice felt more than medically knowledgeable. I wonder now if stillbirth was something she experienced too. She was the first one to warn me of the primal need to hear my baby cry.

Nurses followed. They took my blood. They were the first ones to call me, “Mama.” Someone brought in a form for a birth photographer. I asked my sister to fill it out for me. I am so thankful now for every piece of the hospital’s protocol. I may never have thought to request my own photos. Today they are my treasures.

My body continued to feel pregnant. I still peed constantly. I still felt my son’s feet embedded under my ribs. I still rubbed my belly, looking for some clue he was still with me. None of it felt real.

At home, I tried to sleep, but found that I couldn’t. I took a bath and wrote a very long letter to my baby. Afterwards, I was sitting on the couch, thinking about getting ready to return to the hospital, when my water broke. It was 24 hours too late.

~
* Names have been changed to protect privacy.

I left the hospital in a fugue state. I had thought I was “okay,” but as the first notes of music came on the car stereo, the tears returned. My sister reached across and held my hand, my other hand other clutching the teddy bear from the hospital. I was thankful then for the weight of the bear. It was exactly what I needed.

My dog Amy Anne met me at the door, howling a very specific, pitiful cry she only used when she was upset or overwhelmed. I opened the back door to let her outside and sat on the grass, still clutching my bear. Amy jumped around me, alternately licking and bark-crying, running short distances and then running back again. She tried briefly to take the teddy bear from my arms, but when I told her no, she stopped.

I don’t remember if I ate that night. I mostly remember wanting my bed. I crawled under the covers, cuddling with my cat, my dog, and my bear. I slept the whole night.

Milk

It is an irony of nature that even mothers without living children experience the aftereffects of giving birth. I woke up the next morning full of milk, swollen to the point of pain. I had decided in the hospital that I would donate my milk. It felt important to me. So although I wanted nothing more than to stay in bed forever, the pain and my promise both forced me to get up.

I found the box of pumping supplies in the spare bedroom. Assuming I wouldn’t need it for weeks, I hadn’t prepared anything. I’m sure the pump was easy to use, but in my foggy state, it took more than an hour and several YouTube videos to put it together correctly. When I was finally ready, my breasts were so full they weren’t able to be pumped. My sister called my doula, who sent over a list of suggestions. She also came to visit that evening, and helped me pump just over a thimble-full of early milk. It felt like the biggest accomplishment in the world.

In the following days, I think it was milk that kept me going. It was the desire to produce that spurred me to eat and drink. It was the need to be “clean” that kept me from alcohol. It was the pain of the milk itself that got me out of bed each morning. It was the one thing I was capable of doing.

Early Days & Hard Things

I was not capable of talking to people. My sister had handled the first phone calls for me. She had called my team leader, who communicated the loss to those who needed to know. She fielded calls from multiple concerned managers, and coordinated with the coworker who brought me flowers and food the second night we were home. She handled everything I asked her to, but some things had to be done by me.

Since my son was born on a holiday weekend, the “normal” events were somewhat delayed. My sister had cancelled my appointment with the midwives, but they called Monday morning to ask about rescheduling. It was the first time I had to say the words, “My baby died.” It came out as a screech.

The second conversation took place with the hospital’s coordinator for the disposition of remains. They had been closed by the time of Adrian’s birth on Friday, so his body had remained in the morgue over the weekend. Because they called me, I was shocked at their lack of preparedness — one of the first questions the coordinator asked me was if my insurance policy was under my husband’s name. She also asked me repeatedly if I wanted an autopsy on my son’s body; after discussion with the pathologist, I decided only on an examination of the placenta.

I avoided personal conversations for a long time. It was so difficult to form sentences; I couldn’t imagine entire conversations. I turned off Facebook almost immediately, and sent every personal call to voicemail. One evening, I worked up the courage to call my best friend, but I missed her. When she returned my call, my courage has disappeared. I sent messages in text, told a handful of people who been trying to check in. Each conversation was excruciating. Each conversation was recognition that my son was really dead.

If it had been an option, I may have stayed in my house forever. I ordered groceries (and ice packs for my breasts) from an online delivery service. My sister cooked all of my food. When I finally did have to leave, I didn’t know what to wear. Knowing that women still look pregnant for months after delivery, I had originally planned to wear my maternity clothing, but that now felt so painful. I couldn’t stand the thought of anyone asking me when I was due. For those first weeks, I dug into my closet for the largest t-shirts I could find, paired with ratty sweatpant-material capris. As I told my sister, I didn’t care if anyone thought I was just fat.

The Funeral

On 4 July 2017, a day I had planned to be cuddling a new baby, I started planning Adrian’s funeral. It was hard, but it was necessary; I felt a burning need to honor my son’s life.

Throughout this time, I cried and raged and continually fell apart. As focused as I was on funeral arrangements and continuing to pump milk, it was still a daily battle to get out of bed; to understand that this was my new life.

A week after his death, I sent a five-line email and funeral announcement to everyone I knew. Writing it took hours. Sending it was one of the hardest things I’ve ever done.

After the funeral, I fell apart again. I continued to eat, drink, sleep, and pump milk, but I had little energy for anything else. My sister had a commitment at work and had to leave. She was worried about me, but I promised her I would be okay. I had promised Adrian I would be okay.

After my sister left, I picked up Adrian’s ashes from the funeral home and some memorabilia from the hospital. They had saved his clothing like I requested, and also provided two sets of dental-clay hand and footprints. I was so thankful to have so many pieces of my son’s memory.

I continued to sleep with the bear from the hospital, and also with a stuffed gray elephant that had been given to me on a diaper cake. My bed was full of things to cuddle. I placed his ashes in his bassinet.

I continued to write to him. Like planning the funeral, it also felt necessary. It was how I continued our bond. It was how I explored our grief.

During the funeral, my brother and my cousin’s wife both offered to visit me. I think everyone worried about me being alone, but I needed it. I needed time to feel and scream and grieve. At the end of July, I went to visit them instead.

Travel & Family

My brother, aunts and uncle, and several cousins live in California. Getting on a plane to visit them after only three weeks felt both too soon and also like going home again.

I have always been close to my cousin Neil*, who is only a year younger than me. When he married March, it felt like instant kinship. As she is also a therapist with a very gentle personality, staying with them felt right.

My second day there, March asked if I wanted to join her for yoga. I had gone once several months prior, but hadn’t kept up with my practice during pregnancy. Still recovering from giving birth, it was difficult getting back into my body again, but the difficulty felt good; grounding. We went twice more during my trip, and I continued my practice when I returned home again.

We also went shopping. I was normally such a clothes horse that Neil had commented on the size of my one small bag, but I had almost nothing that fit. We shopped enough that I left with a second bag, and felt far more confident in my post-delivery appearance.

I also felt good just being around good people. My cousin’s family was easy. His two young children were sweet and playful, and my aunt was an energetic but soothing presence. I also spent time with my older cousin and his wife, and discovered that they had experienced child loss as well. It is a terrible and too often unspoken story.

While in California I continued to pump milk, but having never established a strong supply, it was always difficult for me. On the seventh day of my trip, I pumped for more than an hour to produce less than one once. On that day, I decided I was done.

At Home

When I returned home, I visited my midwife and my office. At work, I wanted to check in, to show myself I was capable of walking back into the building again. I also wanted to determine when I would be coming back to work. A lot had felt uncertain before.

At my midwife’s office, I was surprised with a summary of the pathology report on my placenta. I hadn’t realized it would be ready so soon. She discussed the high level findings with me, promising to send the report itself by email later. I left in a fog, with more questions than I understood. I also didn’t realize until much later that it was typical to be physically examined at the six week mark. That didn’t happen for me.

The following week, my sister and I went on a cruise I had booked in a fit of impulsivity the week following Adrian’s death. I thought it could be a healing trip, as if healing could be accomplished solely by blue water and sandy beaches. For the first few days, I threw myself into activities, trying. Towards the end of the trip, I realized it’s possible to be miserable while surrounded by beauty.

I had one week at home before starting work again. Even after seven weeks, everything felt rushed. I felt like I never had the time or space I really needed to grieve.

~
* Names have been changed to protect privacy.

Excitement and Early Days

As soon as I confirmed my pregnancy, I signed up for everything. I saw my prenatal provider as soon as the hospital assigned one. I signed up for classes and mailing lists and interviewed a doula. I had been reading the Mayo Clinic Guide to a Healthy Pregnancy while I was planning for pregnancy; I continued reading it, and also devoured the thick book created by the hospital. I even signed up for a service that would send a nurse to my home once a month to work with me. I wanted to know and be prepared for everything.

My pregnancy with Adrian was fairly textbook. I experienced some typical pregnancy symptoms early on (sore breasts, slight nausea), and my quantitative hCG numbers were high and doubling on schedule.

One morning, around the seven week mark, I almost pulled over on my way to work because I thought I was going to throw up. This was the beginning of a period of nausea so ever-present, I understand why many women call it “all day sickness”. For the next six weeks, although I never actually threw up, I felt like I had a constant cross between a bad hangover and the flu. Ironically, intense morning sickness is moderately accepted as a sign of a strong and healthy pregnancy.

While I was slightly overweight when I became pregnant and I turned 35 during my first trimester, none of my providers seemed overly concerned. I was categorized as “low risk” throughout my pregnancy.

Other Symptoms and Events

Because I had done so much reading, I wasn’t surprised when I first felt round ligament pain. It was a moderately painful sensation that would have caused concern if I hadn’t known it was a normal part of the process of expanding the uterus. I really thought I knew and was prepared for everything.

I also wasn’t surprised when I experienced two intense migraines towards the end of my first trimester. When I became pregnant, I stopped receiving my quarterly Botox injections for migraine control, and I knew that withdrawal and/or the pregnancy hormones could potentially stimulate unpredictable headaches. They were difficult, but not unbearable.

One thing that bothered me more than expected was back pain. Beginning about halfway through the first trimester, I experienced a low-grade but nearly constant ache in the small of my back. Although my providers said it was normal with weight gain in pregnancy, I thought it was interesting that the ache started before I gained any weight.

To assist with both the migraines and the lower back pain, I saw a chiropractor nearly weekly for the second half of my pregnancy. The back pain never went away entirely, but the chiropractic care definitely helped. Perhaps more surprisingly, while I continued to have a few small headaches, I did not experience another intense migraine after working with the chiropractor.

The Natural Movement

Being a vegan, a sometimes yogi, and a lifelong tree hugger, I often lean towards the natural side of things. My pregnancy was no different. My prenatal vitamins were vegan. I subscribed to both the nature-oriented and more traditional sites. And I gave a lot of thought to unmedicated childbirth. After discussion with several moms who had delivered without medication, I signed up for childbirth classes in the Bradley method. Although Bradley is also known as “husband coached childbirth”, I felt that the core principles, which were centered around childbirth with minimal interventions, were well aligned with my own core values. Additionally, my doula was available to take on the role of “husband”/coach. Looking back, I value what I learned in Bradley classes, but I do wish today that we had spent at least a little time discussing scenarios in which interventions are medically necessary. Such scenarios aren’t common, but they also aren’t rare enough to justify a lack of genuine consideration.

It was partially because of Bradley, and partially out of examination of my own feelings, that I decided to establish concurrent care with a midwife practice. It wasn’t covered by my insurance, but it was important to me to have the option to deliver in an environment more conducive to nature and with minimal interventions. Although this was my preference, I did also understand that dangerous conditions could develop, and because of this reason, I continued to see my insurance-covered, more traditional provider as well.

To document my wishes, I created a very simple birth plan. I used visual images and short phrases to describe the handful of items that were important to me — minimal interventions, freedom of movement, immediate skin to skin, delayed cord clamping and delayed bathing. Everything fit neatly onto one page with room to spare. In concert with my doula, I also considered the alternative — should a c-section become necessary, I still wanted immediate skin to skin and delayed bathing, but everything else would go according to the recommendations of my providers.

What if?

I think every woman fears the worst case scenario. After my son died, I thought for a while I might have been a tiny bit prescient for sometimes worrying about my pregnancy, but now I wonder if maybe that’s just normal; if maybe every mother worries just a little bit? In the early days, I didn’t have much cause to be concerned.

When I was about five months pregnant, I spent several hours driving in one day. I worked a volunteer job that required some travel outside the city, and that night I didn’t get home until almost 10 pm. I had noticed some stiffness in my legs during the day, but it wasn’t until I got home and undressed for bed that I realized my ankles no longer existed; they were that swollen. Thinking of the late hour and the long drive to the hospital from my home outside city limits, I called the triage phone number, and asked them about my symptoms. We decided together that as I was feeling in generally good health, and with no other warning signs, I was fine to wait to see my provider at my regularly scheduled appointment the following day.

Looking back on my pregnancy to this date, even including my decision not to go to Labor and Delivery that evening, I don’t think I did anything wrong. I don’t think there was anything I missed or dismissed without thought. My main concerns came afterward.

Some Possible Signs

My prenatal provider gave me compression socks during my appointment the following day. The swelling went down the day after that, though it seemed to come back very easily. I then noticed one morning that the one ring I wore on my right hand was tight. My hands didn’t seem very visually swollen, but I started wearing my ring on the chain around my neck. It was around this time, but maybe a little later, that my blood pressure started to slowly but steadily increase. Not very long later, the nausea that had disappeared at the start of my second trimester began to return. It was never as bad as those early weeks of all-day sickness; it mostly came and went. I noticed that the midwives were the only ones to even ask me about it, but everyone said it was normal.

The midwives were also the only ones to test my urine at every visit. They never specifically told me the results, but I also never asked, and again — nobody seemed concerned. I wonder about this a lot today. I wonder about this the same way that I wonder about my screening for gestational diabetes. Nobody ever explicitly provided my results for either of these things¹. I always just assumed that no news was good. Now of course I will always wonder.

If you’re familiar with the symptoms of preeclampsia, you may have caught on that I displayed many of them. In my eighth or ninth month I asked my doula about it. I don’t know why I never asked my providers. Or, I guess I did, but always in an offhand manner: “So, I feel like I have all the symptoms of preeclampsia except for protein in my urine?” Looking back, I don’t know why I was so reluctant to be more aggressive. This was my body, my pregnancy, my child. Not speaking up more is one of my strongest regrets.

Throughout this time, my back pain continued to bother me. I tried several support bands, but none seemed to help for long. As I put on weight and as Adrian began to move, I also discovered some pain in my groin area, in the same place I had fractured my pubic bone about ten years previously. My provider referred me to an orthopedic specialist, who confirmed that the bone was still intact, but stated that the surrounding tissues were probably tender and aggravated from the pregnancy. He recommended physical therapy, and stated that I may have some added pain in labor.

While this referral was processing, I continued to experience pain, often to the point where it was difficult to walk. One day when the pain was particularly intense, I went in to Labor and Delivery for an evaluation. While there, they discovered I was having low-grade contractions. I was familiar with the feeling of Braxton Hicks from our exercises in Bradley class, but I was still surprised that I could have contractions and not be feeling them at all. After monitoring, increased fluids, and a pelvic exam confirmed I was not in actual labor, I was sent home with instructions to drink more water for the rest of my pregnancy.

Towards the end of my ninth month, I also experienced pain in my upper right arm and in my wrists. I had heard that wrist pain was common in pregnancy and generally went away after delivery, so I didn’t raise the issue with anyone. The arm pain, though, was odd for me. On several mornings towards the end of my ninth month, I awoke feeling as if there were an electric shock running through the fleshy portion of my right upper arm. I never found out the cause of this pain.

The final issue that was never clear to me concerned kick counts. There was a section in my book from the hospital to document counting, but none of my prenatal providers ever really discussed the process with me. I mentioned in centering one day that my baby seemed more active on some days than others, and that I wasn’t sure when to be worried. All my provider said was, “Yes, kick counts can be important.” I blame both of us for not being more concerned.

Non-Stress Testing & Discussion on Induction

Although I had no other risk factors for a high-risk pregnancy, as a nod to the fact that I was exactly 35 years old and therefore considered to be of advanced maternal age, my hospital provider wanted me to do two things: attend weekly non-stress testing (NST) starting at 36 weeks, and be induced at 39 weeks.

I had no problem with the non-stress testing. It wasn’t something I considered a true intervention, and it made the providers happy. So beginning on the morning of my 36th week, every Thursday morning I went to the hospital for this test. I used to joke with my sister that Adrian always “performed” on those days. Even on quiet mornings, he kicked at the NST straps almost the moment they were applied, and he always achieved at least the two accelerations the nurses were looking for, if not more, in the twenty minute time frame.

However, while I didn’t object to the NSTs, I was strongly opposed to being induced. I genuinely didn’t understand the objective; so many of the conversations made it sound like it was for convenience. And here is where I have to put some of the blame not only on the providers, but also on the literature. As much as I paid attention in prenatal visits, as much as I devoured the books², no one ever told me I was risking stillbirth. Induction was always presented to me as something that could prevent “complications”, but the specific complications were never discussed³. Nobody ever told me that there were warning signs that something could be wrong. Nobody ever explicitly said, “If you don’t have your baby now, he or she could die.”

The Last Week

On the morning of my 40th week of pregnancy, I went for an NST as scheduled. That morning I noticed my blood pressure was higher than usual for me, significantly higher than the past several months, and only a few points below the threshold marking stage 2 hypertension in the general population. I pointed it out to the nurse running my test, but although she kept me on the monitor for a bit longer than normal, she didn’t seem concerned.

The previous day, I had met with my midwives for my 40 week check. I had mentioned to them that my baby had been moving less than usual. I also mentioned that I had experienced a sharp pain in my upper right abdomen, just under my ribs. I discovered afterwards such pain could be related to both placental abruption and/or preeclampsia, but at the time, they didn’t seem concerned. At both of these visits, I was obviously swollen, my hands thicker than normal, my feet having long since outgrown anything but a single pair of flip flops.

I think back to these two visits now, and I wonder if things could have happened differently — if I could have made more of a fuss, asked for more testing. I don’t know why I assumed that medical providers are perfect. I don’t know why I didn’t feel confident enough to push for stronger confirmation.

I left my midwife appointment and my NST appointment both with instructions to not come back for another week. That was the week my baby started to die.

Worried about my blood pressure, I stopped in to use the machine in the grocery store pharmacy on several occasions that week. About a day after my last NST, it had started to come down to a more normal number for me. I also drank raspberry tea, and started walking around the block and spending time in the pool, hoping something would jump-start my labor. Around this time, I started to feel both crampy and slightly queasy, both signs I had read and heard from my doula were good indicators that labor was coming.

On the Sunday before Adrian died, my sister and I went to a movie. Throughout the film, I assumed the loud noises were bothering the baby, because he kicked like crazy. However, he continued to kick after we left the theater, and this movement was like nothing else in my pregnancy. I learned later on that such intense fits of fetal activity are indicative of potential cord accidents. If I had know this then, I would have gone immediately back to the hospital, but I didn’t know; I simply thought this was one more sign he was getting ready.

On the Wednesday before my 41st week, I was cranky and achy and so very ready. I had been so opposed to being induced, but I had an appointment with my midwives to discuss the options on Friday. I knew a pregnancy couldn’t go on indefinitely. I was actually dreaming about the possibility of a 4th of July baby.

That evening, I had planned to go to a community event, something local to get out of the house, but when we got home from shopping, I wasn’t feeling great. I decided to lie down and stare at my belly. I remember distinctly the very large kick Adrian gave me that night as I lay on the couch. It was so strong it shook my belly. It’s possible that was the last movement he ever made. When I woke up the next morning, he was already dead.

1 – Reviewing my medical records after delivery, I discovered that I did not have gestational diabetes or protein in my urine. I am still frustrated that my providers did not explicitly provide this information.
2 – In the Mayo Clinic book, stillbirth is listed a complication of disease or use of drugs/alcohol, but never as a risk of an overdue pregnancy. In the book I was given from the hospital, stillbirth was not discussed at all.
3 – A number of websites discuss pregnancy complications, but it is interesting that even articles like “Overdue Pregnancy: What to do when baby’s overdue” don’t list stillbirth as a potential outcome.

I walked into the hospital on the morning on my 41st week of pregnancy, feeling achy and anxious, but never dreaming — it’s still hard to say the words.

I walked into the hospital thinking about the appointment scheduled for the following day, the appointment where we had agreed to talk about being induced. I walked in thinking about the best way to transfer the results of this “routine” testing to my midwives, who worked across town. I walked in thinking about trivialities, and I was blindsided. Nobody tells you that stillbirth is a possibility. I still remember, even while screaming, that I was thinking about the three other women in that testing room, and how I must have been their shocking introduction to the fact that babies die.

And sometimes, when I really need to cry and just can’t get there, I think back to that morning. I think back to that moment — after the nurse had left because she wasn’t allowed to tell me, after the doctor came in so quickly and finally said the words — I think back to that moment when I’m lying on the exam bed, and it all becomes so real. And I see this moment, not from inside, but from out — I am looking down on myself from a distance. I am surrounded and also alone. And the word that I screamed was, “No.”

I have never been afraid of my tears, even in public. I cried when I paused at a kiosk in the mall, and I ran my fingers over an elephant ornament I decided I wanted, even though I don’t put up a tree. There is no shame in finding, on a random Tuesday, that your tide is overflowing, that you’re drowning while still breathing.

Sometimes tears are armor. For a while, I tried to donate my milk. I never made it very far; it’s so much harder than I knew. But the first day I went in to the bank, clutching my insulated bag of translucent bottles, and the coordinator asked for the age of my child, my tears were my protection. I only had to turn my face, and I didn’t have to say anything; she instantly knew.

When leaving my last job, I had to give a speech. And it was important to me, then, to acknowledge what that organization had been to me. It was important to address the enormity of the support I had received, the way that they had bolstered me. And I wonder still if I went too deep, if people were made uncomfortable by my words, but I will never regret my tears.

I have a lot of trouble settling into my new world today. So many things are perfect here (too perfect, maybe?). So many things are easier. I have the freedom I craved to just — be. I spend a lot of time walking and exploring and staring at the waves. I spend a lot of time writing. I am nearly always writing. I have beauty and support and all these things I’ve needed, and something still is always missing. Not just my son, that constant aching, but also my tears. I need and I miss and I love my tears.

And on those days, when I miss him so much that my presence is aching, I think back to that morning, to that day when he and my innocence and I all died. I think back to that morning, and I think of those screams, and that is what allows me to cry. I always want to cry.

Your donor has brown eyes. So do I. I still wonder if yours would have been green or violet or newborn baby blue.

I still wonder if I should have waited just one more moment longer–surely you were only sleeping?

I guess the hospital sees this a lot. I couldn’t nail down an answer from the social worker, but judging by statistics, it must be at least weekly. They have a whole protocol. They put you in a private room, assign a personal nurse. They were beautiful, by the way. They were the first ones to call me “Mama.”

…

People talk on TV about the newborn smell. The top of the head, something hormonal. When they gave me my son, he was wrapped in a blanket. He was wearing a knit cap, because his head was sunken in. This is actually common (I pushed for 4 hours). It’s something that happens, but only living babies recover from it. I never took off that knit cap.

I peeked under a bit. I wanted that smell. I wanted something stronger than the silence at his birth. His skin did still retain it. He was so newly dead. I could almost close my eyes and just pretend.

I came home from the hospital with boxes and bears. I came home with that blanket, that tiny knit cap. I put them in a plastic bag to carry when I travel. I slept with them under my pillow on a cruise.

There are also other blankets, and also other clothes. Part of the protocol was more than one memory. When I left, I couldn’t stand the thought of him naked. Those clothes came to me later, in another plastic bag.

When he was first born, my son had that newborn smell. But here is the secret other parents don’t know. When I picked up that second bag, it was also comforting. And everything in it smelled like death.