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 2nd 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?

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Would you rather know?

The thought came up in my bereavement group. Someone said they just wished they were told that babies died- that these awful things can happen- hearts stop beating in utero, water breaks too early, placentas abrupt, birth defects are incompatible with life, babies are deprived of oxygen in labor. Being someone who knew that babies die for all sorts of terrible, but not common reasons, I can’t identify with that wish. In some ways I wish I didn’t know. Of course, I sought information and am thankful I knew what I knew so I could prepare. But in general, I’m not sure all pregnant women want to know. And as a provider I’m not sure I want them to know. There are some things, yes, I think it’s important they know- ones that they have control over or can test for, but the unpredictable? I don’t think I want all my patients living in unnecessary fear. I’m sad I missed out on the blissful ignorance of a first (or second, or third…) pregnancy. I thought it was bad enough having extra information as a midwife, but then being given the actual knowledge that my baby might die, I never really enjoyed being pregnant in the way I wish I could. I’m not sure I ever will.

I had a patient- an educated one, a nurse in fact, in front of me for her first OB appointment. I was doing my usual spiel when we got to genetic testing. I don’t have endless time, so I try to summarize and simplify the issues as best I can. She had no risk factors, so I talked of a test that can detect the risk of having a baby with Down Syndrome and trisomy 18 and 13. I usually qualify the statement, explaining most people are familiar with DS, but the other trisomies can be more severe and those babies don’t often survive the pregnancy and rarely live into childhood. I talk much more in detail about them if people ask (surprisingly few do), but it is important for me to let people know what they have the chance to test for. If a woman declines testing, I have to ask “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?” I am pro-choice (pro-information!) and just need people to be comfortable with their choices. And sadly, medically legally, this question is important. There have been wrongful life cases in Connecticut (talk about sad, people suing their providers because they wish their living child had been terminated). I need to document their wishes. I don’t even cringe when people say yes, they would terminate a baby with DS. But I have a problem when people declines testing because they think it won’t happen to them.

The patient sitting in front of me said she didn’t want testing and when I asked my standard question, “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?”

She responded, confident that her age of 33 put her at no risk, “Well, that’s really only a concern when you’re 35, right? And I have no family history.”

After a few more failed attempts of trying to get her to understand that it can still happen despite no risk factors I finally said, “Well, I had no risk factors- I was 33 and had no family history and I still had a baby with a trisomy. So it can happen to anyone. What I need to know is would a trisomy diagnosis change your management?”

I hated bringing Mabel into the conversation, but she just wasn’t getting it. I felt she needed to know.

I had another patient with a subchorionic hemorrhage that kept getting bigger and bigger each week in early pregnancy. She had two late first trimester miscarriages and had been about to pursue IVF when she found herself spontaneously pregnant. As the hemorrhage grew, we providers all held our breath, thinking this pregnancy might go the way of the others. If she remained pregnant, it was so big she was at risk for placenta abruption in the second and third trimester. She was educated too- another health care professional and said to me as I expressed some of my concerns “We are just taking it day by day.” She is still pregnant, in the second trimester. I have mentioned placental abruption, so she knows. But I haven’t gone into detail, saying I’ve known people who had such a case and preterm babies who died. She didn’t need to know. Or perhaps she did know, she just didn’t need to hear it harped upon by me.

So how much do we tell pregnant women? We can’t induce everyone at 39 weeks because some babies’ hearts stop at 40 weeks. We can’t do c-sections on everyone because babies’ hearts can stop in labor. There are risks to those as well. I don’t even tell women to do kick counts daily- it only increases worry. Do kick counts when they are worried, I tell them. Women know their babies best- if baby isn’t moving like normal, then take the time. This is the struggle I have as a midwife- I know the bad that can happen. But I also know most of it is unpredictable. So I take this burden on myself; I worry for my patients, so they can have the blissfully ignorant joyful pregnancy that they deserve. Worrying about unpredictable things can only increase stress and cortisol levels, which isn’t good for moms or babies either.

(disclaimer: I don’t mean to minimize anyone’s anxieties around loss, especially once you’ve experienced it. once you’ve known loss, worry away! You’ve earned the right to worry, even if it’s about unpredictable things. Your innocence was lost like mine.)

What do you think? Do you wish you knew babies died? How would it have changed things? Do you feel the need to lecture pregnant women on the awful that can happen?

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?

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One year ago today

“It’s Down Syndrome.”
I heard the voice say on the other end of the phone. Her voice had a soft melody to it, with the sentence ending on a slightly lower note than the beginning.  I had been waiting anxiously, eagerly, for this phone call since I had the CVS three days before.  I spent the weekend researching all I could regarding increased nuchal translucency and enlarged bladder.  Most of what I read terrified me. In all that I found, aside of the obvious desire for normal results, I hoped it was Down Syndrome.  The other likely scenarios were Trisomy 18, which would have brought a harder choice or megacystis, where the baby would die.  At that point in my pregnancy, I could not imagine carrying a baby to term that I knew would not survive.  Down Syndrome was livable, not what I had pictured, but totally livable.
“Ok. Ok.” I said, exhaling, trying to calm my racing heart. “That’s ok.  It’s not Trisomy 18.  My baby can live.”
“Do you know what you want to do?” my midwife asked in a non-judgmental way.
“I want to continue.  I need to talk about it with Chris, but we discussed the scenario, and I think we’re ok.”
“Do you want to come in right now and talk?” she asked.
“No. it’s ok.  I have three more patients to see anyways.  It’s ok.”  I was surprisingly calm, no tears.  We said our good-byes after she told me I could stop by afterhours if I needed to.
As soon as I got off the phone, I called Chris and told him the news.  At first I heard what I thought was disappointment in his voice, but realized later it was simply surprise.  Based on the nuchal translucency, we were given a 70% chance that the baby would be chromosomally normal. In his world, those are pretty good odds.  In mine, I knew what those numbers really meant. We agreed to talk more when I got home. I then went and saw my next few patients all while keeping it together as this huge life changing news rattled my head.  Little did I know that this would be practice for what was to come.
One year ago today I learned that the baby I was carrying had Down Syndrome.  I took the news in stride.  Tears came later when I thought good and hard about how my life would change, but I didn’t doubt my ability to raise my child with love regardless of her diagnosis.  Over the next few months I prepared myself.  I read memoirs of those raising babies with Down Syndrome.  We met with a special needs lawyer to get our finances in order and prepare for the future of our child. We attended our state conference for Down Syndrome, learning about the local services, preparing for potty training and meeting parents of children with Down Syndrome.  We found a pediatrician that was very familiar with Down Syndrome, researched day cares accustomed to Birth to Three and started collecting names of good therapists.  We embraced the diagnosis.
Perhaps you can understand the enormity of my loss. Sometimes I feel like I have to justify my grief- yes, I’m sad even though she had Down Syndrome.  Yes, I’m sad even though she would have been very ill.  Yes, I’m sad even though we were told she might die.  I know I don’t have to justify my grief to most of you; you are all so kind.  I think I’m simply processing the special injustice of saying yes to so much and not being even given the chance to parent this baby beyond the NICU.
What injustices do you mull over in your mind?

The screams I swallow in the patient rooms

“Answered many questions” is often a code phrase we use in charting.  Some patients simply have an abundance of questions needing answers.  It can often be in stark contrast to ones who don’t ask any.  We always answer their questions, though sometimes we might suggest saving some for a future visit if we are running out of time.  A detailed conversation about pain relief options for labor is better had in the third trimester, so when a patient asks about epidurals at their second prenatal visit, I’ll often give an abbreviated answer, so that we can focus on more appropriate topics for the stage of pregnancy that they are in.  When I see our code phrase in someone’s notes, I enter the room prepared to be more directive in our chitchat, so I don’t run late and thus respecting my other patient’s time as well.

A few minutes into our visit I wish someone had written the code phrase, so I would have been better prepared.  The hard part with her questions was that they didn’t really have an answer.  She just needed to talk about her anxieties.  I am someone who understands anxiety, so I am usually quite understanding when a patient needs to talk things out.  I think I may have lost this sense of understanding when Mabel died.

After entertaining her questions about multiple physical complaints, reassuring her that all she felt was normal, she launched into her concern about the First Trimester Screen, a basic screening test for Down Syndrome and Trisomy 18.  She was scheduled for later in the week and was nervous because she knew someone who had it and the doctors had told her they thought the baby had Down Syndrome.  The expectant mom chose a CVS and then had to wait two weeks for the results.  The baby didn’t have Down Syndrome, but those two weeks of waiting and worry were just awful!  She couldn’t imagine having to do that! She was so nervous about going for the screen because she didn’t want to have to deal with a false positive, like that.   She was so anxious, how awful.

“If you knew your baby was going to have Down Syndrome, would you terminate the pregnancy?”

“No.”

“Then don’t do the test. It’s optional.  If it’s going to cause you more stress and the results wouldn’t affect your thoughts on your pregnancy, maybe your shouldn’t do it.”

Usually I’m having the reverse conversation with patients.  When women decline the test I have to confirm with they that they truly understand what they are declining.  Many women feel that they are low risk (no family history “young”- less that 35) and so are declining because they essentially think they are invincible.  I have to confirm with them that knowing they had a baby with Down Syndrome or Trisomy 18 wouldn’t change their thoughts- they would continue the pregnancy regardless.   The last thing we want as providers is for someone who declined testing because they didn’t truly understand what they were declining, to end up with a baby with one of those trisomies and wish they has made another choice.  It’s not my job as a provider to make them feel bad about their decision- I soley want them to understand them fully and embrace them.

“But I want the ultrasound!” she said when I suggested the test seemed to be causing her too much stress.  She continued on about how anxious she was.

That was it.  I couldn’t take it anymore.  I wanted to take her by the shoulders and shake her, screaming,  “I know!  I know EXACTLY how it feels to be told your baby might have Down Syndrome and have to wait for the CVS results!  I KNOW! And you know what?  That’s not the worst.  The worst is living with the fear of miscarriage and stillbirth after you get the positive results.  The worst is to accept those results and welcome that baby only to be told months later that the baby would likely die.  The worst is to live out the rest of the pregnancy afraid to bond with the baby, unsure how to respond when people congratulate you and to cancel your baby shower because you don’t know how to celebrate the baby.  The worst is not being able to keep her inside you longer, where you know it is safe and she can breathe.  The worst is hearing the doctor say she is going to die. The worst is seeing her face vent free for the first time in her moments of death.  The worst is holding her lifeless body and then giving it to the nurse never to hold her again. THAT is something to worry about.”

But I don’t say any of those things.  I swallow those screams and let them sit there in my belly, churning in sadness, anger and annoyance.

“Well, this is one of those hard choices you make when you become a mother.” I say curtly and end the conversation.  I reach for the doptone to listen for her baby’s heart rate, signaling to her I am not going to talk anymore about it.

Snippets  

“How’s the baby?” she asked all smiles.  The joy in my office was palpable- she was there with her sister, as her support person for her first OB visit.  They both remembered me from her last pregnancy and clearly remembered that I had been pregnant myself not too long ago.  And now they wanted to bring me in and share the joy with them.  How sweet of them to ask; it actually pained me a little to give the truth.  “Oh, my baby died.”  Shock.  Disbelief. Discomfort.  “Oh no, I’m so sorry,” they say, with brows furrowed unknowing what more to do.  “She was sick.  We knew she was sick.”  That made it better somehow.  Sympathetic “oh”s followed making it easier to transition back to the visit at hand.  I did not cry or break down.  I was just mesmerized at how I felt that I had to make them feel better about my baby’s death.  I practically said, “It’s ok that she died because she was sick.”

____

We were talking of her plans for labor.  “I’m pretty easy going,” she said. “I don’t care if I end up with an epidural or not, a c-section or not, as long as she’s healthy.  I just want a healthy baby, you know?  As long a she’s healthy.”

I don’t know.  I have NO idea what it’s like to simply want a health baby.  It’s not all that matters.  Each time she said healthy, the word stabbed me in the chest.  Of course every one wants a healthy baby.  But now I feel like there’s some sort of ignorance, or even greed to that wish.  Like playing a scratch card- everyone wants  to win $1million, but I’d be happy for $1, as long as I could take that dollar home.

I cut her off with a quick “ Yup.  You’re next appointment is in one week.” And I left the room, exposing my pain with some unintelligible mumbling of certain cuss words under my breath.

___

I walked into the exam room and I could see the exasperation already on her face.  Young and annoyed to simply be pregnant, she glared at me as if it were all my fault.  I have faced this look before.  Many women are uncomfortable at the end of pregnancy.  They want to know when they’ll be able to sleep again, to be rid of bad heartburn, to shed their newly acquired cankles.  We spend their whole pregnancy talking about one date- their due date.  I explain in the first visit how it’s an estimated due date, give or take two weeks, but that lesson is long forgotten by the time that magic day rolls around.  They are done; they just want to meet the darn kid already, not realizing they are about to trade one set of difficulties for another.

I used to be more sympathetic.  Now as I looked at this young woman giving me a sour face and I want to shake her and scream You don’t know how good you have it!  I don’t smile at her, trying to be her sympathetic ally.  No coddling about understanding how tough it is to be so pregnant.  Gone are the words I use to sweetly remind her how nature works and time will bring her a baby.  Instead I talk robotically about the protocols for induction leaving emotion and compassion crumpled in a heap in the corner of the room.

_____

“Man, labor hurt like H-E- double hockey sticks!”  Her actual use of that phrase almost made me laugh.  Her baby was a few years old, but she still remembered.  “Do you have kids?”

I had a daughter.

“Oh, “ her voice dropped and her face took on an appropriate somberness. “Is that you in the sign?”  I nodded.  “I was reading it in the waiting room.  I’m so sorry for your loss.  She was beautiful.”

I smiled “She was, thank you.  And thank you for reading about her.”  And with just the right amount of pause I add, “ and yeah, labor did hurt like H-E-double hockey sticks.”  No derailment; we are back on the path

______

If a patient declines genetic testing it is our practice in my group to make sure we document that they wouldn’t terminate for those reasons.

“If you knew you had a baby with Down Syndrome or Trisomy 18, would you consider terminating the pregnancy?”  I hear them say no and write the words in their charts.  Over and over I say these words- several times a day.  How can I not think of Mabel?