Radio Silence

Well, the day came and went. It’s now 369. In a way no different from day 365 and yet in a way very different. The day was symbolic, of course, and to borrow a term from my pilot brother, I have been radio silent since as I recovered from and sorted through my emotions.

I spent the day doing not too much- sat on the couch, took Muppet to the dog park and did some light cleaning. I took out Mabel’s box- or boxes, the bereavement box we got sent home from the hospital with, the box of pregnancy related things I had kept, the box of cards and what nots I had saved. I got a little teary eyed looking at her outfit- the pair of pants she didn’t even wear because she was too small. They had pockets.  FullSizeRender_2

Her hat still had strands of blond hair in it- which made me smile because the lock they cut for keepsake looks brown. I opened up the tiny blood pressure cuff and held it to my face- I swear I could just catch the scent of her.

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I packed it all back up and organized it the way I want, keeping her bereavement box in our bedroom and putting some of the other stuff away in a closet.

We visited her grave and brought a balloon- Chris unknowingly bought a Hello Kitty one, but we figured she’d like it.  By the time we got to the cemetery, one of the letters fell off and so it read “Happy Birthday abel.”

The evening we had a few friends over- which turned into a few more- and had dinner and cake.

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Singing Happy Birthday to my dead daughter actually didn’t feel so good, but it seemed like the logical thing to do. We watched her video and my friends got teary eyed, while mine remained dry. I realized I don’t like to cry real tears in front of people. I was reminded of how in the immediate days after her death, with family filling the house, I would sneak up to my room to cry unwitnessed.

My tears came the night before, triggered into a meltdown when one of my midwives messaged me about how on the eve of her kids’ birthdays she often thinks about what she had been doing way back when, and how hard it must be for me to do that. The message was sweet and needed, opening up the flood gates. I didn’t have a good cry again until I crawled into bed on Sunday, crying about some of the disappointments from the day- the people I didn’t hear from. Crying about how my life and relationships had changed so much in ways that I felt I so sad about. Crying about how my daughter was dead-how I have a dead child.

I’ve spent the next few days sorting through it all- trying to focus on all the kindnesses, the so many kindnesses that came with the day and not be consumed by the sadness of disappointments (some of which I’ve since decided were justified, some of which were not).

So in that vein, I want to share with you all some of the many Random Acts of Kindness. There are too many to even list, many I don’t even know about and not enough words to thank those who have done them.

  • Donations to children’s museums- in CT, in RI
  • Cupcakes to my care team- the practice I work for, the midwives who cared for me, the MFM docs who cared for me, Labor and Birth, the NICU
  • "we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes."

    “we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes.”

  • Flowers at Mabel’s grave
  • play dough too!

    play dough too!

  • Carrot soup
  • Books that showed up as gifts (including the one on the right that came from unknown sender)
  • did any of you send the Help Thanks Wow book?  it came without a sender...

    did any of you send the Help Thanks Wow book? it came without a sender…

  • Gifts for children’s hospital in Boston and Indianapolis
  • Shoveling neighbors snow in Massachusetts and Connecticut
  • cards! so many cards!
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  • Donation to help migrant workers and their families in Florida
  • Diapers and kids treats donated to a homeless family in North Carolina
  • Donation to a Down Syndrome organization in Virginia
  • A children’s book donated to my town’s library
  • Letting people go ahead in the airport line
  • Buying ice cream for the kids at the next table
  • Dinner buying for a cancer survivor
  • Baking carrot cake for a friend
  • Coffee bought for people in line behind the buyers
  • A big tip left for waitress, a big tip left for a bartender who is fostering a baby with Down Syndrome born addicted to heroin
  • A donation given to a homeless man in a wheelchair
  • A donation to the Perinatal Mental Health task force in LA
  • Water bottles given out to strangers in LA on a very hot day (hard to conceive in chilly new England)
  • A carrot hat given to me
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  • Presents donated to a local shelter including a carrot stuffy
  • Donation to a high school lunar rover team in CT
  • Handmade carrot wreath for my door
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  • Letters from Thai high school students
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So much sadness.

She stared up at the ceiling, eyes welled with tears, while I stared at the screen, searching, looking for anything that would give me better news. Moments before we were in another exam room chatting cheerfully about the latest developments in her pregnancy. She had just started feeling movement and her fundus was a few fingerbreadths below her bellybutton, just where it should be for 17 weeks. I searched with the doptone for the classic “thud-thud-thud” of her baby’s heartbeat but all I hear was static and artifact.

“Baby’s being stubborn,” I said, a sinking feeling already settling in my gut. “Let’s go take a look instead.”

I looked and looked, feeling helpless- the machine was old; I’m not a trained sonographer- but I couldn’t see the telltale flicker that told me everything was alright. Everything was not alright.

“I’m having trouble finding a heartbeat. “ I put down the probe as tears filled my eyes. I didn’t hide them- they were no match for hers as she let out a panicked and woeful “No, no, no!”

I sat her up and hugged her hard. I told her I couldn’t tell for sure- old machine, needing a formal ultrasound- but I was worried. I had to send her to the hospital. She called her husband, forty minutes away and I repeated my uncertainty- it seemed what she wanted to hear, what would get her through that endless wait for her husband and then the drive to the hospital. I sat with her for a bit and then had to go see more patients. Between each one I checked back in with her, not having any words to say to would ease the pain, because there are none.

Husband arrived, off to the hospital they hurried and everything was confirmed. Her baby had died.

Here I am, a babyloss mom myself and I was still at a loss. I thought of all the awful experiences people have had with their providers (and remembered the good ones too). But I had a sudden empathy for the bumbling providers. Some behavior is inexcusable, but there are many other clumsy caregivers who just wish they could take away the pain, but know they can’t. Stupid words fall from their mouths, medical processes are focused on- all because they were helpless. Their pain is nothing compared to the patients, but I had a little more insight. It had been a long time since I had to say the words and it was my first time since my own loss. It sucked. It was terribly heart wrenching for me and even more so for my patient.

So much sadness.

What was your experience hearing bad news? What was done well? What do you wish could have been done differently?

Finding a little fulfillment

I’m overdue for a post, I know. Some weeks there are plentiful moments that grab and illustrate my grief and other weeks there are no new moments just the same old same old, repeating “my baby died” or she is not mentioned at all. For the most part this week was the latter, hence my absence from writing. But there have been a highlights to my week.

I gave a talk to the midwifery students at my local school of nursing. I felt GREAT afterwards. My only regret was time management. I was there with another babyloss mom who is the program director of our local babyloss bereavement nonprofit and the main goal of our session was to give the personal side of things- they were to have a lecture afterwards on the clinical side of babyloss. I, of course, was happy to share every detail about Mabel’s story- and I did, getting far more detailed than I usually do because these are students who understand what oligo means and pulmonary hypoplasia signifies. I talked and talked and talked and then was out of time- so just ran too briefly through all the notes regarding points I wanted to make on how to help bereaved parents. The best part, I think, was the handout I brought. I took all the comments you wrote and took quotes from them- labeling it “Advice from Baby Loss Moms.” Beside each quote I wrote who said it “mother of Sacha, who died of an unexpected brain tumor the day after birth” and “mother of Clara, carried to term after a Trisomy 18 diagnosis and born still at 36 weeks” and “mother of baby lost to miscarriage.” I took suggestions from everyone who commented and know that the students read your words and knew of your baby.

Being in the school and talking in front of the students made me feel very fulfilled. I was reminded how much I enjoy teaching and how much I have to teach. I think doing more of this will help me bring some satisfaction back to my job.

The rest of the week was relatively unremarkable- except for one day. I started off with a patient who knows Mabel’s story and has told her kids about her even. After a big hug and a quick but genuine cry, she gave me a gift from her oldest daughter. A pink carrot with Mabel’s name written in 4 year-old script.

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The following two appointments were remarkable as well. One, another babyloss mom, whose first child was stillborn, is finally pregnant again after too long a struggle with infertility. I am constantly awed at how unfair the world can be sometimes. We embraced and each shed tears- I told her of all the times I thought of her son, including in May, when I was at a babyloss Mother’s Day event, where we lit candles for babies taken too soon. When it was my turn, I lit a candle and said it was for Mabel but also for the other babies I had cared for- for Giada, for Mia, for Noah, for Olivia…and name all that I could remember. It was a good visit. Following it was another patient who was newly pregnant after miscarriage. When I couldn’t find a heartbeat last time, we both cried. I was thrilled to see her back and back so soon.

I remember feeling this way with patients before my loss, but the emotions are so much stronger now. Part of me wonders if I could just have a practice with the babyloss, but that is not feasible. A nice idea, huh? A waiting room full of patients who know loss? In another world…

 

How was your week? Did you find fulfillment anywhere?

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?

Day 10: Support

My grief journey started well before Mabel was born.  I grieved the original vision I had of a typical baby when I learned she had Down Syndrome.  I grieved the potential risk of miscarriage and stillbirth that came with that diagnosis.  I began grieving the death of my child when we learned it was a real possibility at 27 weeks.  My grief wander high and low as I crept week by week, my baby still alive inside me and then hit hit full force in the days, weeks and months after she was born and died shortly after.

“Down Syndrome children are born without malice,” one of them told me and I began to celebrate the new vision of the child I was going to have.

“You need to meet with this doctor,” another told me, encouraging me to seek out a well respected neonatologist on the medical ethics board.  With that meeting I began to plan how to best help my baby.

She didn’t put me on bedrest, like many would have done, simply because no one knew what to do to help my baby.  “Exercise,” she said, “is good.”  She gave me a little sanity.

She came with cabbage leaves and breast pads to soothe the raging milk that kept reminding me there was no baby.  She put me on a sitz bath, reminding me that my body needed to be cared for too.

“Parents aren’t supposed to bury their children,” she cried unabashedly, sitting in my bed with me in the days after.

My OB team- my midwives, my doctor- was and still is a huge support for me.  It’s national Midwifery Week.  So it’s well timed that today I thank my midwives (and my M.D., my Midwife Doctor).

#CaptureYourGrief

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“I fell off the cloud…”

After reading Jasmine’s post  that ended with the strong set of words I’ve used to title my post, I was inspired to reflect on when I felt the same.  Today I share my most recent time.

She approached the table with recognition in her eyes. “You delivered my baby!” she announced with a smile. The words could have been directed at any of us, three midwife friends out for the night. The comment has always struck both joy and panic in me. It feels wonderful to be recognized as being part of someone’s most intimate moment. I had another midwife friend once say “The next best thing to being someone’s mother, is being a midwife.” There is a little panic in the comment because I don’t always remember my patients outside the delivery room. We have a busy practice- I deliver probably around 75 babies per year- plus I’m in labor with numerous other women who go to c-section or get delivered by the midwife after me, so I don’t always immediately register the face of someone I delivered.

This time the comment was not directed at me. She faced one of my friends and they caught up a bit. She looked at her midwife and said, “Would you like to see a picture?” There was pride and hope in that voice. Her midwife eagerly acquiesced as the mom flipped through cell phone photos and gleefully showed off her child.

I had been enjoying such a nice evening- spending time with two of my favorite people. There is something special about midwives, and I say that as a friend of them not as one of them. They are not afraid to talk about difficult things; they delve deeply into my emotions. We can talk about both vaginas and good wine in the same sentence and it’s not weird. In that same way I can talk of Mabel and my day at the beach in the same sentence and it’s not weird. Spending more time, growing closer with these two friends of mine has been a secondary gain in the aftermath of losing Mabel.

So when this woman introduced her baby into the conversation, I fell off the cloud.

My breath caught and my heart sank. I felt that familiar pit in my stomach fill with lumps of sadness and jealousy. I had witnessed many acts of parenting that day, but for some reason this one got to me. My own pride in my child will always be tinged with sadness. I will have no future pictures of Mabel. I will never get that chance years down the road to pull out my phone and show her off in that way. It made me sad.

The night was wrapping up anyways, so we paid our bill and said our goodbyes, but it was too late. I had already fallen off the cloud.

When have you fallen off the cloud?

Do you have any secondary gains?

My local midwife meeting

I sat at my quarterly statewide meeting of the American College of Nurse Midwives, surrounded by a mix of midwives I’ve known for years and many new faces.  Some I see regularly in my day-to-day life; some I only see at these meetings.  A few knew what had happened; many did not.  The meetings are a chance for us to catch up socially, discuss political action items and learn something.  I had decided earlier that day that I was going to speak when it came to announcements from the members.

When the time came, my heart pounded in my chest as I looked at the thirty or so faces staring at me.  As I began to talk, the scraping of plastic forks and knives against the paper plates filled with potlucked food ceased.  My voice steadied as I began speaking the words I had rehearsed in the car on my drive to the meeting.

“For those who don’t know I had my daughter Mabel in February.  From thirteen weeks we knew that she had Down Syndrome.  At twenty-seven weeks I was diagnosed with oligohydramnios, due to her failing kidneys.  At thirty-six weeks I went in to labor.  She lived for six hours and died of pulmonary hypoplasia.  I spent my pregnancy preparing for a baby with Down Syndrome and learned of some resources that I didn’t know of otherwise and thought they would be helpful to us as providers…”  I went on to describe the resources and gave a handout.  I ended with “I don’t know what it’s like to raise a child with Down Syndrome, but I know what it’s like to be pregnant with one.  And now I know what it is like to lose a baby.  So if anyone has any questions about Down Syndrome or loss, I’d be happy to talk more.”

I told her story.  I told my story.  Stories intertwined liked the ropey veins and artery of her umbilical cord, literally connecting her life with mine.

I was well received; several people came up afterwards to give me condolences.  It was empowering to tell Mabel’s story.  I hope to do more of it.

It was a start.  Our stories are unfinished.  I can see how the next few chapters may unfold.  Mabel will speak her story through me, teaching providers in the medical community about Down Syndrome and about perinatal loss.  Together we will help create more compassionate care.  Together Mabel and I will keep writing our story.

One of the midwives, familiar with Mabel’s story, held the handout and said in front of the group, “Are those Mabel’s feet?” referring to the small photo I had put on the paper.  Yes.  Those are her feet.  Take them home with you.