Trauma…anger…understanding…acceptance

I am grateful. Grateful for the many gifts life has given me- health, family, work, financial stability, friends, freedom. It’s how I get through my days.  But every now and then I need to process some uglier feelings. I think it’s important to show that grief has many faces- that the instagram and pinterest-worthy grateful griever is an unrealistic ideal.  Yes- I am grateful, but I am also sad and angry and jealous and frustrated. I hate that I feel the need to preface this post- but I want people to know I”m not angry all the time…it’s just one of my feelings, perhaps the most difficult of them all.

***

PTSD is common after perinatal loss. I haven’t been diagnosed with PTSD but my therapist and I talk a lot a bout how the trauma of my pregnancy with Mabel and losing her after birth still affects my daily life.  I’ve struggled with framing my daughter’s death as a trauma- I feel this immense pressure (self imposed) that since I had so much notice- months- to prepare for my baby’s likely death, I should have handled and still be handling it all better.

But the tentacles of trauma reach long and far, in ways that surprise and frustrate me. I still cannot react to pregnancy news in the way I once was able, in the way that I wish I could.  I recently learned that many of my close friends were pregnant- life events that are wonderful.  But instead of being able to share in their joy, I retreated because I found the only feelings I could express were jealousy and even anger- reactions my friends did not deserve at all.  Even though I’ve sat with these pregnancy announcements for months I still feel angry. It’s a misplaced emotion, I know.  Of course I’m not angry at my friends for being pregnant. I’m angry that my daughter died and all that came with her death. I’m still angry.

• I’m angry that I had such a traumatic pregnancy- one emotional blow after another
• I’m angry that I lost the blissful ignorance right away, never allowed to think “oh everything will be fine” with her pregnancy or my subsequent pregnancy- and watching others with their well deserved bliss brings up that anger.
• I’m angry that my daughter didn’t get a baby shower. I’m angry that I cancelled the shower. I’m angry that I didn’t celebrate her more. I’m angry that I didn’t know how to, because there is no handbook on how to do what I did. Baby showers are still hard- a reminder of what I lost.  Sometimes I go, sometimes I don’t.
• I’m angry that making mom friends is hard because bringing up my dead daughter always makes the get-to-know-you small talk awkward.
• I’m angry that others don’t have to struggle with these issues, making me feel even more alone.

And as I grapple with this anger, I struggle with the need to rely on my friends to help me process it all and dealing with their misunderstanding.  No one has said to me straight up “waiting for and then watching your daughter die is not a traumatic event.” However people have said to me “Really? You still feel that way? Even three years later? Even after Felix?” When I hear those sentiments, I am reminded that those who have not lost a child will never understand- how could they? I’m slowly realizing I can’t expect others to understand my trauma, my reactions, my anger and my grief, as foreign and weird as they may seem. But I hope that they can accept it, as part of who I am.

****

Are you angry? How do you cope?

 

 

 

at the dog park

At the dog park, we watch our dogs run around and play together.  We refer to each other in relation to our pets.  “I’m Muppet’s mom.” and “Oliver’s mom brought dog toys.”  We swap names of groomers, complain about those who don’t clean up after their dogs and laugh our dogs romp around.  Occasionally, the conversation turns to life outside of our dogs.  Bringing Felix to the park often invites this kind of conversation.  Today, I had the same question, but different conversations.

_____

“He’s been cranky all day, which is not easy when I work from home!” I shared when someone asked about the little guyI was wearing in the baby bjorn.

“What do you do for work?”

I explained about my two jobs- I work part time as a midwife and part time for a non profit. Usually people, especially other women, pounce on the midwifery as an area of interest.  But this time it was different.

“What non profit?”

“Hope After Loss- we support the pregnancy and infant loss community. We run support groups, do outreach and give financial support for burial and cremation.”

“Oh….” the light hearted tone of the conversation had changed.  A beat later, the lightness returned as she changed the subject. “How was your labor with him?” she asked, nodding toward Felix.

“Hah! That’s a story!”

“Oh, was it long?”

“Oh no, it was super quick,” I said as I gave her the breakdown of how after a fifteen minute labor he was born into my hands over the toilet.

“Wow! And he’s you’re first!?” she said questioningly.

“My second, that’s why he came so fast.”

“How old’s your first?”

“She would have been 20 months…” I could see the confusion in her face as she tried to understand the past tense.  “But she died.”

Her face fell as she struggled to comprehend. “Oh I”m so sorry… She lived for 20 months?”

“No, she lived for six hours.”

“I’m so sorry,” she repeated, looking distressed.

“Thank you.  I like talking about her,” I reassured her.  Then followed a short conversation about my daughter.  It felt good to be open and honest.

As we wrapped up the details of Mabel’s birth and death, she looked at Felix in the baby carrier and said “at least you have him now.”  Looking for the silver lining in the death of a baby.

I kissed my son on his head and said “Yes, I am so grateful to have him.  But I miss his sister still.”

________

“Is he your first?”

“My second.”

“Oh, well then you know what you’re in for!” she said with a smile.

“Nope.  No I don’t.” Except I didn’t say that.  I thought it.  I thought about saying it, especially after the previous conversation I had. But I didn’t.  There’s just a split second I have to make the decision, whether I tell her.  I spent that split second thinking and not speaking and the moment was over.  Sometimes I wonder what the conversation would have been like had I spoke.  It’s just so much easier to answer direct questions rather than volunteering the information.

The same question over and over.

We stood in the middle of the dog park watching our dogs romp and run.  She commented on how cute Muppet was- not an unusual thing.  Muppet is surprisingly well loved among the regulars at the dog park.  I guess not too surprising- she’s a lover of people and dogs alike.  Playful, soft to the touch, recognizable.  Even a quasi-celebrity after she survived a near attack by another dog, which was photo documented on the park’s facebook page.  Muppet was doing her typical zoomies around the park, trying to get other dogs to engage in a game of chase.

“Is this your first?” she asked me, nodding at my big belly.

“My second,” I smiled politely.

“Oh good!” she said, relieved, as she watched my puppy and her boundlesss energy.

I didn’t think much of the comment until  not a few minutes later, in a different spot, I had basically the same conversation with another woman.

“Oh, good,” she commented when learning this was not my first baby.

Perhaps I’m over-analyzing but, do they feel better about my crazy energetic puppy because she is supposedly used to having another kid in the home?  What if I told them there was no other child in the home?  I wasn’t angry, just perplexed about their responses.   I know, I’m extremely sensitive in general to that seemingly harmless question.  But what do you think they meant by their responses?

Earlier that day I was at bootcamp and was paired up with a woman I had seen before but don’t think I’d even spoken with.  After introducing ourselves, she asked it this was my first. I shook my head with a small smile.

“What else do you have at home- boys, girls?”  she asked pleasantly.

I relied on my standard response. “I had a daughter,” I said simply.  Usually that’s the end of the conversation- I often think people either don’t pick up on the past tense or do, but don’t know how to respond.  Or perhaps because I don’t elaborate, they think I’m unfriendly.  But this woman surprised me.

“So you have this one and your angel in heaven?”  My face lit up with a mixture of surprise and happiness.  She not only got the reference but actually acknowledged it!  It doesn’t matter that I don’t envision Mabel that way; it just matters that she understood the meaning behind those four words.  She understood that I was trying to tell her that I had a baby and she died -in a gentle way- to give her an out, killing the conversation.  But she made my day by really hearing what I said and not being afraid to respond.

I looked at her and gave her a real smile, nodding and saying “yes.” This time I was the one who didn’t know how to respond.  I tried to convey in my eyes and grin, how grateful I was for her simple comment.

By the end of the class she offered to give me a baby carrier she was trying to give to a good home.  It was almost like having a mommy friend.  So that’s what it feels like!

It certainly beats the “make sure they go to bed at the same time!” piece of advice I was given by a fellow bootcamper, after she asked it it was my first.  People so very much want to relate to you when you’re pregnant.  I didn’t have the heart to tell this other woman that my daughter was eternally sleeping, so I I just nodded and tried to seem receptive to her advice.  Really I was just speechless- I often look back at these moments and wonder how I would have felt if I responded differently.  I am proud that I can reflect on these interactions thinking about how I  would have felt and not necessarily pondering how I would have made the other person feel by announcing my daughter’s death.   Clearly I still have concerns, or it would simply roll off my tongue- “my first child died.”  But instead I’m subtler, hinting, without being ether obvious or lying.  In the moment I might still be protecting others from the horror that is child death, but now I can analyze the interaction later really just wondering if I had the best response for me. 

How have your responses to these type of questions changed over time?  Are you able to think of yourself as the most important person in the conversation? Do you still struggle worrying about how others feel when mentioning your loss?

z

That same day

“has not had a period since birth of her son on February 15, 2014”

I read the last note I had written on the patient before I went in to see her.  I rarely am so specific in the dating- usually I’d say something along the lines of  “has not had a period since childbirth 5 months ago.”  Clearly the date had struck me.  I wrote it down mindfully, deliberately in the note.  I remember that visit.  I was seeing the patient in the same room actually and thought of how that was also Mabel’s birthday.  At the time all I could think of was how she had a baby to go home to and I did not.

On this day, many months later, a new thought crossed my mind when I re-read my note.  As I stared at her, all I could think of was how she had been on the labor floor at the same time as me.  She was there, down the hall, when I was wheeled from the NICU back to my labor room so that we could call our family in private and tell them our daughter was going to die soon.  As I said “it’s a girl!” in the same breath as “her time with us is short,” picturing the five pound wonder child I had just left on a warmer, tubes criss crossing her slowly bluing face and body, this woman was holding her baby on her chest, shushing those first newborn cries and excitedly cooing over her own little wonder.  Not long later I held my dead daughter as I struggled to keep my eyes open, having been up all night in labor, but not wanting admit I needed sleep for it meant saying good bye to my baby forever.  She probably struggled with fatigue as well, wondering how on earth she would be able to take care of her needy little one when she was just so tired.  I returned to a postpartum room, crawled into the hospital bed with my husband and slept, undisturbed in a quiet room.  She went down the hall, her attempted sleep punctuated by cries telling of a needed diaper change or feeding.  I walked out of the hospital with a box and she was wheeled out with a baby.

I write these words not out of bitterness and jealousy, as I would have many months ago, but out of fascination… that here we both were, face to face, our lives forever changed by the birth of our first children on that same fateful February day, in the same place, but how very very different our lives are now.

 

 

Unmastered question

Muppet and I preformed a rescue mission last week. It was my day off and a particularly warm day for those of us in the northeast. My car thermometer hit the 50s as we drove to a local hiking venue. The snow on the main and easiest path is usually packed down enough for hiking up to the top in just hiking boots and the day was no exception. There were several other hikers, many with dogs, out that day too. We had just turned the first few bends of the path when we stopped in front of a lady crouching down, two dogs at her side.

“Is this your dog?” she asked somewhat confused. I then realized that one of the dogs was leashed and the other she had by the collar alone. When I spoke my no, she then asked “did you see anyone looking for a dog?” Apparently she found this dog walking down the trail unaccompanied. I took a turn holding the dog, calm and content sitting with us, as we investigated his collar for tags. His name was Max and we found some phone numbers. The other woman tried one, but had no service. After a few attempts I was able to get someone on my phone. Before I had a chance to speak, a woman’s voice asked “do you have a little brown dog?” She wasn’t far downt he trail and Max apparently was a little hard of hearing, but we held on to him until his owner appeared and leashed him up.

Pretty content withourselves, Muppet and I continued up the trail with the original woman who found Max. We chatted for quite a bit- mostly small talk, about things like our dogs and the weather. I remarked how it has been frustrating taking a puppy out so much in the freezing temperatures, always on a leash. I went on to say how the past weeked was really rough because it was cold, but I was also super sick and had to take care of the puppy alone, because my husband was out of town.

“Oh, do you have kids then?”

Such a benign question in most other scenarios. I sighed mentally as I tried to decide how to answer. I still hate denying Mabel’s existence with a simple “no.” And the “none living” doesn’t sit well with me either. But this woman was a complete stranger- we hadn’t even learned each other’s names. I knew far more about her dog and her previous one than I did about her and here I was debating how to tell her such an intimate detail of my life.

“Not in the house…” I mumbled awkwardly. Ugh. I didn’t want that to be my answer. I just needed more time to think about it and craft the words that I really wanted to say. The conversation continued, but my response was still on my mind. But another opportunity presented. I can’t remember what exactly brought us to it, but I found myself saying, “Well, I had a daughter last year, but she died after birth. I got Muppet as a puppy not long after, so she could help fill that space. She’s my baby now.” My tone was cheerful and loving and her response was the appropriate “Oh, I’m sorry.” I was able to transition the conversation back to the dogs, talking about how protective I am of my puppy and the small talk flowed.

This interaction has sat with me though, now days later. I thought I was good at answering that dreaded question, especially when I’m in my office, where I hear variations of it most often. But I suppose I was unprepared on the trail. I guess I need to learn to be prepared all the time. I think I would have been happier if I answered “Yes- a daughter” or “I had a daughter” and see where the conversation went. Perhaps next time.

Has this happened to you? Thought you had mastered something in your babyloss world, only to be caught off guard and stumble?

The Muppet Puppy, dog rescuer.

She’ll remember

Some patients are difficult. Some take a long time. When I saw on my schedule that I had a patient coming in who “needs extra time” and had an extra slot blocked off for her, my stomach dropped a bit- it would make for a long afternoon. Until I read the name of the patient and realized who it was. Yes, she needed extra time. Yes, it could be difficult to care for her. But she was so pleasant- a pleasure actually.

Her chart labeled her simply as “learning disabled.” I have been taking care of her for years, having inherited her when her previous midwife left our practice.   My guess is she is on the autism spectrum somewhere, though I am not a psychiatric provider. She also has some compulsions, leaving the house wearing no less than ten layers of clothes. The extra time needed for her was merely so she could dress and undress.

She spoke in in a loud monotone voice, but was friendly. She complimented me, and just about everyone else she interacted with, on at least several pieces of clothing I was wearing.

“That’s a nice sweater and necklace and shoes and hairstyle. Your hair is so long. It wasn’t that long before.”

“No I think it’s the longest I’ve ever had it.”

She has an astoundingly accurate memory- for people and dates especially. She could tell me the exact date of each of her mammograms over the past year. She quoted from a letter she received from her previous midwife informing her of the death of a mutual friend of theirs.

“I didn’t see you last year. I saw Margaret. You were on maternity leave,” she started. I could see where this was going. “Did you have a boy or a girl?”

“A girl,” I answered with a smile. Isn’t it nice when people ask about our babies?

“That’s nice. When was she born?”

“February 15.”

“Oh, the day after Valentine’s day. That’s nice.”

And then the visit somehow went one. I asked my typical calcium intake and exercise questions. We discussed her weight. I asked how retirement was. And all the while I thought about her amazing memory. I would have told her the truth if she asked the right question, but it didn’t come up. I felt like she would ask about my baby in years to come, because she would remember. So at the end of the visit I said to her,

“I have to tell you something. You asked about my baby earlier. Well, I wanted you to know that she died shortly after birth.”

“Oh, that’s so sad,” she said without hesitating. “What happened?”

“Well, she her lungs were too small and she couldn’t breathe.”

“Why were her lungs small?”

“So she had some birth defects, because she had Down Syndrome. Sometimes babies with Down Syndrome had issues like hers.”

“I know some people with Down Syndrome. That’s sad about your baby.”

“Thank you. And thank you for asking about her.”

I wanted her to know, because she’ll remember. She’ll remember Mabel for years and years.

Is there someone you know that will remember your baby always?

Sunday Synopsis

Brides are now donating their wedding gowns to an amazing cause–  At the end of my pregnancy, I remember looking online for a baby burial outfit- just in case.  Not much out there.  The closest I could find were christening outfits- but they were gender specific and we didn’t know if we were having a boy or a girl.  I also worried they would be far too big for the small baby I was expecting.  I eventually stumbled across the perfect outfit which came just in time before we had to bury our little one.  It’s hard enough to have to even consider buying a burial outfit that small, so it’s heartwarming to hear that some people are trying to make that terribly sad and taboo task a bit easier.

NILMDTS photographers camera stolen-  Remember this?  Camera card returned to the news station!  expensive camera equipment weren’t but the memories were so gratefully returned to the bereaved parents.  there’s even a fund started to help replace the photographers equipment.

These photos show what women really look like after pregnancy  *TRIGGER WARNING* this has moms with babies in it.  I post it because I still get so upset even seeing this headline. I feel like the moral of the photo story is- it’s all worth it because, look, we have these beautiful babies to show for it.  The 4th trimester.  What about us?  We are not even underrepresented- we are passed over entirely.  It angers and saddens me.

Bridging the gap between the baby bereaved and those who love them–  I stumbled across this at such an opportune time.  It touches on something I’ve recently been trying to work on- rebuilding some lost relationships since my daughter died.  It’s not easy because I had built up walls.  I like how this article makes it a two way street- we are often quick to blame others for not understanding, not reaching out.  But we also play a role. In the time leading up to ThanksgivingI was dreading some face to face time with a baby around Mabel’s age.  Her mother reached out to me a few days beforehand, recognizing how the holiday might be hard for me and asking if there was anything she could do to make it easier.  It was such a gift- to be asked directly.  I was able to answer honestly about my concerns regarding seeing the baby and give warning about my unpredictable reactions.  It was SO much easier to be asked than to volunteer the info.

Meet the first model with Down Syndrome to walk at New York Fashion week.-  Love this!  It’s great to see more positive images of people with Down Syndrome in the media.

 

 

 

 

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.  

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.

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.

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.”

• Flowers at Mabel’s grave

• 

  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…

• Gifts for children’s hospital in Boston and Indianapolis
• Shoveling neighbors snow in Massachusetts and Connecticut
• cards! so many cards!
• 
• 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
• 
• 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
• 
• Letters from Thai high school students
• 

Words of Advice from Baby Loss Moms

At the end of my talk to my local midwifery students, I gave them a handout, that speaks volumes.  You may recognizes some words, because they were simply taken from the comments section in response to my question of what would you like midwifery students to know about baby loss.   Feel free to comment if you have more advice to give! Here is the handout:

Words of Advice from Baby Loss Moms

 

“Video clips of ultrasounds meant so much to me and I would have like a recording of my daughter’s heartbeat if they could have given me one. At the time I didn’t know it those would be my only memories of her. I appreciated when my doctors were honest but sensitive.” -mother of Caroline, carried to term after a Trisomy 13diagnosis, who lived for 58 days.

 

“I think they didn’t tell me anything because they had no clue what was going on themselves and wanted to wait until they had more info- but, that choice made things much worse!!!! Talk to the patient, you have to talk them through what’s going on, you have to tell them. Also: if there’s a chance a baby might not make it, you have to prioritize letting the parents see the baby while working out the logistics. I didn’t get to see my kid until after he was gone. I even asked but was told it was too complicated. That’s still absolutely devastating to me, and probably always will be….One other thing: I was given the choice to go to private room on postpartum, or to a different floor. I really appreciated having a choice.” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Perinatal loss can be such an “ambiguous loss”. It was so validating to see everyone reinforce that he really was a real baby (a concept that almost all brand-new mothers struggle to comprehend at the moment of birth).” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Even if the death occurs later, call or write or visit the parents. We so appreciated that one of our midwives and her intern were able to make it to the ceremony we held for Paul. But a call would have been just as meaningful…. If applicable, invite the parents to share a photo of their baby for the baby photo board or book.” –mother of Paul who died unexpectedly a few weeks after birth

 

“And for subsequent pregnancy: if you need to discuss the death of the previous baby, give notice in advance so the parents can prepare (especially if you need them to tell their story, or to dig into traumatic events). Also I was offered a viability scan I didn’t “need” but that was really reassuring.” –mother of Paul who died unexpectedly a few weeks after birth

 

“With miscarriage (or infant death in general I suppose), even if there is ‘something wrong’ with the baby that you can prove with genetic testing, no one should ever say ‘It’s OK- the baby had a problem anyway.’ I’ve noticed a lot of pregnancy books use this kind of logic, and it’s bad. We don’t throw out people or stop caring about them because they’re sick, so what are we supposed to feel better that our baby that died wasn’t perfect, and that caused his death?” –mother of Serphim, who died of Potter’s Syndrome five hours after birth

 

“Encourage parents to hold, kiss, love, bathe their baby… If you’re uncomfortable handling a dead baby, please ask one of your colleagues to take over. This was our only negative experience with the staff- and it felt awful to have someone reject our precious babies. Remember that these parents need your care, support, love perhaps more than anyone else on the floor.” –mother of A&C, twins who died after PPROM at 20 weeks.

 

I was that woman, sitting in the OB office following my 19 week anatomy scan when the midwife came in with a student and very coldly and matter-of-factly started to explain the slight anomaly found on ultrasound. When I started to cry the midwife offered little support and I could tell she was busy and I think she really believed the finding was nothing major and that I was over-reacting. It was the student who came back into the room alone and sat with me, let me cry, and explained what was going on as best as she could.   So my advice to your students is that there will be days in clinic when you are busy and running behind and stressed, and these are the days when you might have to break bad news to a patient (or several patients), and your pager might be going off, and your receptionist might be reminding you that you have 3 patients in the waiting room, and you will probably have a huge stack of papers on your desk that need to be reviewed… but in that moment, for that patient- your time and presence is what she needs most.” –mother of Clara, carried to term after a Trisomy 18 diagnosis and born still at 36 weeks

 

“It might be tempting to let the parents know that their loss isn’t a big deal compared to what other people go through, but that can be very disturbing to the grieving parents. Don’t tell them it was nature’s way of getting rid of damaged goods. It was their baby. They loved that baby and would have done anything to save it. To you, it was a blighted ovum, or a common Trisomy problem, or ‘barely even a positive’ – but to that family it was precious and beloved. The loss is still very real no matter how unformed the physical person may have been.” –mother to baby lost to miscarriage

 

“Our nurse hung a doorsign of a baby in an incubator on our door so that those entering my postpartum room would know that we had a NICU baby. That was great as it eliminated any too-cheerful questions. However at my six week postpartum checkup, the doctor didn’t know my baby had died.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“Cyr, take photographs- YES. And remember, you can never tell a loss mom that her baby is too beautifulm too perfect, too special and too unique. She will never hear this as her child grows. Give her a lifetime of school picture Oohing and Aahing in the short time you have with her. Use the baby’s name.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“I was pregnant with our 2^nd baby and had our first u/s at 9 weeks. They couldn’t find a heartbeat. I t was hard and still is. I recall the u/s tech saying ‘oh I just know you’ll be back in 3 months pregnant again!!!” She was just so hopeful. But that’s not what I wanted to hear. I needed to honor THIS baby and THIS loss. So overall, I just wanted the midwife team to honor the present and respect what we are going through at the moment.” –mother of baby lost through miscarriage

 

“To make sure parents have all mementoes of their baby that they would like; to make sure parents know they have no been ‘cast adrift’ from the unit- you become so close to staff whil your baby is being cared for going home is like an estra wrench on tope of the loss of your baby; to make sure parents know how to access counseling. I would also add a couple points about traumatic birth- whether it’s something like PPH or an illness such as preeclampsia and HELLP syndrome- that mums know where to get information about what happened to them and why, and how to access support/forums/debrief about the birth.” –mother of Hugo, born at 24 weeks and lived for 35 days

What more do you have to add?

Just think of the midwifery care you can provide to patients…

This post that popped up in my email reminded me very much of the conversation started on one of my Sunday Synopsis’s in the comments. I’ll be honest: I haven’t read the whole thing- and I’m not sure everything resonates with me, because of of the religious aspect.  But it falls under the “things not to say to the babylost” category. I don’t bring it up to start more conversation on the topic, but instead I wanted to share one point that hit me-

3. “Just think of the ministry you can have someday to parents who have lost children.” No. At least not the ministry you’re thinking. That would require me to say that God is somehow in this for them and I happen to know that’s not helpful. Plus, I don’t want that ministry. I’ve spent twenty years of my life trying to serve God full time.  I’ve put every major decision of my life through “God’s will” as a filter, including setting aside life dreams for myself.  All of the big things I’ve tried to do for him have been heartbreak for me.  I think I’m done with ministry at this point. – See more at: http://www.calebwilde.com/2015/01/23-spiritualized-comfort-cliches-to-avoid-when-a-child-dies-3/#sthash.q30SIzFp.dpuf

I have received similar comments that irk me just a bit. I am not religious and therefor not providing ministry, but I am a midwife and provide care. It could have easily read “Just think of the good midwifery care you can provide to patients going through loss.”

Yes. Now that I’ve experienced loss myself, I do think I provide even better care to women as they experience their own- from infertility to miscarriage to stillbirth and neonatal loss. I have learned so much and become a resource for others in my medical community. I am unafraid (less afraid?) to help support my patients through their grief.

BUT, it does not make me feel better about my own baby dying. I like to think I gave decent care before- I might even have a few patients who could vouch for me on that. And even if I didn’t, frankly, I’d rather be a crappy midwife with a living child that a super compassionate midwife with a dead one.   The comment implies that I needed my daughter to die so I could grow personally and professionally. I know plenty of other care providers who could use similar growth, but I don’t wish a dead child on them.

I can see how Mabel’s death has made me a better midwife in some ways, but I don’t really need anyone to point it out or use that to make me feel better. It invalidates some of my grief. Yes, I think I show much more compassion to my babyloss patients, but it was a crummy journey to get there. I would have preferred to avoid it, thank you.