Future midwives

I’m sure I received some training on loss when I was in midwifery school. I don’t remember the specific lecture or chapter in the books, but there had to be some educational experience I received. I remember more the on the job learning. I worked as a Labor and Birth nurse while I was in midwifery school. I helped woman as they worked hard laboring for a baby that was extremely premature, that was unlikely to live, that had already died. I was scared at first- I think scared of saying the wrong thing, of not knowing what to say, of doing something that would make the situation worse.

During school, while I was working as a nurse, I remember caring for one woman who was being induced around 24 weeks, the cusp of viability. Her uterus and amniotic fluid were infected, meaning the baby who already faced significant life threatening struggles that came with extreme prematurity, also faced life threatening infection. Truth was, this baby had very poor chances of survival. The neonatologists knew this and gave her the option of resuscitation or comfort care. As her labor was induced she talked and cried with her family, with her healthcare providers about what was best for her baby. She had a family member who had extremely preterm twins who suffered many long term effects from being born so early. She was unsure if she wanted that outcome for her baby, but also could not imagine not doing something for her child. When my shift was done, she was just getting into active labor and had not decided what to do. I found out later from the nurse who relieved me, that her baby came suddenly, without the doctor even in the room, and she still had not decided. Her baby did not survive. The worst part of being part of her story, was not knowing how to help her. I know, even with all the training and experience in the world, I still might not have been able to help her decide, but maybe I could have. I’ll never know.

I have since been with mothers as the doctor couldn’t find a heartbeat on the ultrasound. I’ve had mothers whose babies come prematurely and die sometime after birth. I’ve had mothers who choose to terminate for a fatal diagnosis and a mother who has carried to term despite one. I helped mothers through subsequent pregnancies and subsequent miscarriages. Each woman I have cared for, I have learned from- more so than in any class in school. Ultimately I have learned most from my own experience.

This week I’ll be joining the program director of my local pregnancy and infant loss non profit in a guest lecture about loss to the local midwifery students. It is at the school I went to, I worked at and I still (though rarely these days) precept at. I sort of invited myself when the program director mentioned it to me- how could I not? This is what I do- I’m a midwife and I’m a babyloss mom.

As we talk to the students, I want to give them all I can. I want them to remember the talk and I hope, being given by someone who knows both sides will help. But I need your help too- I only have my own experience. I’ve come up with some points I wish to make- I know it’s not a perfect list, and so I encourage you to give me your suggestions to. I also know that these do not apply to everyone’s situation and it’s not a comprehensive list encompassing nearly everything- I am trying to look at it from both perspectives- a provider and a patient.

Tell me: What did you want your midwife or doctor to do? What did they do that was great? What did they do that you wish they didn’t?

 

Stillbirth

  • Be honest. There is no good way to say your baby is dead. Don’t sugar coat; just be clear.
    • I was with a mom with a stillbirth at term. She had been sent from the office to OB triage when the midwife couldn’t find a heartbeat on the Doppler. I sat by this woman as the APRN did a scan looking for a heartbeat. We were waiting for the Maternal Fetal Medicine doctor to come and make it official. Since he was tied up, the APRN started scanning, all of us hopeful she’d find something with the ultrasound that the Doppler could not. The room was silent as she scanned, the parents on edge, the nurses and I staring at the screen. It felt tortuous for me- I can only imagine what it felt like for the parents. Finally, because no one was saying anything, I said simply, “they don’t see a heartbeat. I’m so sorry.” I explained how we had to wait officially for MFM doc and I stayed by her side until he came. There were a lot of “whys?” and I was honest there too “We don’t know. We may never know. But here’s what we can do to try to find out…”  
  • Describe the process- let the patient know what happens next (do they want to go home, gather things, wait at all? Induce right now?) Discuss induction and pain management. Discuss the baby coming out- mention about skin color changes and bruising that might be apparent. Offer to call NILMDTS

 

General Loss Guidelines

  • Say “I’m sorry”
  • Use the baby’s name…. over and over.
  • It’s ok to cry- in front of the patient too.
  • Get familiar with the process- offer autopsy, karyotyping, TORCH titers, thrombophilia workup. Talk to the hospital social worker to learn what happens to the baby, how parents arrange services (cremation, burial?)
  • Sit. Be with patient.
  • Coo at the baby- talk about all the aspects of a baby you would otherwise- the hair, whose nose she has. Encourage parents to explore- undress baby, open eyelids. I never opened Mabel’s eyes- I wish I did, just to see the color (likely dark gray as most newborns are, but now I’ll never know)
  • Be a photographer- take photos, encourage parents to take photos. Call professional photographer. Since no one from NILMDTS was available for me, my nurse and midwife took photos- so many photos and I am so grateful they did.
  • Let parents stay with baby as long as needed. Encourage patient to call and invite any support they choose.
  • Send patient to a floor without babies for PP recovery
  • Early discharge
  • Prevention of lactation (also milk donation)
  • Offer sleep aids
  • Referral to resources- counseling, local bereavement groups, books, websites.  Go through your hospitals bereavement box, so you know what’s in it.

 

Follow up

  • Call patient- some potential questions beyond “how are you doing?”
    • How are you sleeping?
    • Who is around to help you?
    • Are you eating?
    • How are you spending your days?
    • Services?
    • Have you looked through bereavement box yet?
  • Postpartum visit
    • Plan first morning appt- so pt does have to wait in waiting room with other pregnant patients
    • Plan extra time for appt
    • Be prepared to go over autopsy
    • Discuss birth control or preconception- no judgement on whether it is “too soon”
    • Ask about photos- ask to see if she has some and wants to show
  • Remember due dates- good time to call or send a card
  • Anytime you are reminded of that patient, tell her-call or text her- she would love to know she is not forgotten
  • Attend services if you are invited and can go

 

Fatal diagnosis (if carrying to term)

  • Frequent appointments if pt desires
  • Listen to FHR first thing
  • Plan for longer appointments
  • Consider frequent ultrasound if pt desires
  • Help patient with birth plan
  • Coordinate care with specialists- NICU, pediatric specialists to discuss immediate care of baby
  • Encourage special plans- blanket, outfit, photographer for baby
  • Discuss logistics- funeral home, cremation, burial
  • Connect- give resources
  • Help patient celebrate pregnancy

 

Subsequent Pregnancy

  • may need more frequent appointments, reassurance of FHR
  • If previous stillbirth- testing (level II, NSTs, early delivery)

 

Miscarriage (also applicable with fatal diagnosis choosing to terminate)

  • Say “I’m sorry”
  • It’s ok to cry
  • Discuss logistics- expectant management, miso, D&C, D&E
  • Discuss “why” (most common known cause- chromosomal, but often we have no idea why…)
  • Listen
  • Discuss future fertility if patient desires
  • Call patient for emotional follow up (“just wanted you to know I’ve been thinking about you)
  • Referral if indicated (recurrent pregnancy loss, genetics)

What am I missing?

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A Birth and A Baby

I didn’t change into scrubs. I wanted my role to be clear- I was there for support, a visitor. My hospital badge was the only tell of my other identity. I stood there in my skirt and ankle boots, making soothing sounds, giving suggestions and just simply being there for her.

This was her rainbow. I had been there to welcome her first born into the world six years ago. A few years later I welcomed her second, born sleeping, into the same hands that caught her brother. She knew her baby was going to die; an extra chromosome diagnosed midway through pregnancy foretold the outcome, but her the hurt and pain was no less than had her loss been a surprise. Now years later she was laboring hard for the rainbow child she nervously awaited. She had asked me to be with her at the birth, knowing my story and thus knowing what she was asking. I said yes, because that’s what you do for another babyloss mom.

Originally, when I figured I’d be ready for call by September, the plan was to induce her on my call day, but that plan had to revised when I came to terms with my inability to attend birth at this time. I gave her my cell phone and would come if I could. All day I saw patients and all day her induction poked along, her uterus waiting for my arrival before really kicking in. On my way to the hospital, I was on the phone with my fellow midwife.

“How are you feeling about this?” she asked, probing.

“Honestly? I’m trying not to think about it until I get there.”

Live in the now. The only way to survive. I knew this would be a test of sorts, to see how ready I was for birth. It was also a good faith show of effort. “See? I’m trying!” my actions shouted.

While she labored, I felt detached. I tried not to think about how just a few rooms away I had done the same for my baby; I tried not to think about what would come next. I was mostly successful- my feelings disconnected from my words and motions. I felt empty, like a robot, doing what I knew I was supposed to be doing. It didn’t feel good. I have spent many long nights, with laboring patients, feeling somewhat aloof- I hadn’t bonded despite my efforts- but I now felt disconnected on a whole new level.

After the telltale “I can’t do it anymore!” she started bearing down and I knew birth was imminent. I helped hold her leg, watching the glistening dark hair of a baby make its way down the birth canal. Baby tumbled out and the midwife brought him right up to her belly. After a tense moment of silence, the cry of a newborn pierced the quiet room. I slowly put down her leg and backed away into the corner, where I found a chair to support me. Tears rolled down my face and snot clogged my nose. I tried to sniffle quietly, embarrassed by my tears. I didn’t want to take any of the attention away from this mom and her rainbow but I sat there sniveling, thinking of my poor baby, who took her last breaths down the hall. Thinking how unfair it was that I have to live life without her, that her absence weighs so heavy on everything I do. Thinking how sad and angry this birth made me, when it should have been nothing but beautiful. Thinking how this scenario of a rainbow baby, of finding joy again in the delivery room, seems so unattainable. Feeling selfish and ruined.

Birth lost its magic.

Reading my thoughts, she said through tears of her own, “Meghan, it’ll happen to you. I promise. You’ll get one too.”

The baby went to the warmer to be weighed and as the nurse helped mom get into a dry gown in preparation for some skin to skin. I walked to the warmer and picked up the little warm, squirmy being. I held him in my two hands a few inches away from my body, walking to her and presenting him like a freshly baked apple pie. No cuddling, no warm body against my chest- those were things I did with Mabel and I want no other baby to taint those memories. I quickly delivered him to his mother, proud that I could say at least I held a baby. I tried.

I didn’t stay long. My work was done- her baby arrived safe and alive. I said my goodbyes, not wanting to talk about the experience with anyone. In a way I was glad some of my colleagues witnessed my raw reaction. I can usually hold it together in the office quite well, wearing the mask of normalcy that babyloss moms are all too familiar with, which is good for functioning but bad for letting people know how I really am. There is something more telling in watching my tender breakdown than hearing me say “I’m struggling.”

I went home to Chris, too spent to even debrief with him. All I wanted to do was hold my puppy. She’s not as docile as a baby, but she’s warm and fuzzy, and she loves me back.

Have you do something hard since your loss? What did the experience tell you?

photo (26)

Parallel Lives

She was telling me about a problem she’s had since her baby was born. To get a better sense of the duration of her symptoms, I asked when she had the baby.

February 15, 2014.

As I typed the date into my note, I my fingers began to freeze. They understood the significance of that day. For the woman in front of me, it was the best day of her life. For me it was the worst. We were in the same hospital, on the same labor floor at the same time. We both held our first borns that very day, changing our lives forever.

My family came to meet my lifeless child, while hers came with balloons and teddy bears.

While she changed diapers in the middle of the night, I slept in an ambien-induced haze.

She woke to the sound of a crying baby; I woke to the sound of my cell phone, a call from my credit card company to inform me of some fraud that happened while I was listening to the nurse ask us if we wanted to call the chaplain.

A day later, I was leaving the hospital empty armed and she stayed learning how to nurse her child.

Her milk came in, as did mine, but she had an outlet for her brimming breasts.

While I planned a funeral, she learned to care for a baby.

I sat on my couch, staring mindlessly at the tv; she longed for the free time she had pre-baby to catch up on her shows.

She watched her baby grow into an infant, learning to smile and respond; I placed photos of my dead baby around the house, knowing that I would never see her smile.

She raised a baby while I got a puppy.

She is a mom and I am the shadow of one.

She lived the life I was supposed to have.

At the end of her visit, I slipped into the bathroom and cried.

 

Have you come across someone living the life you were supposed to have?