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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Conversations about Amniotic Fluid

“Can I ask you a clinical question?” She was a nurse practitioner and 30-something weeks pregnant.

“Sure.” We were done reviewing her labs, discussing childbirth education and listening to the baby.

“How much amniotic fluid is enough?”

I felt a jolt that made my heart beat faster and made me sit up straighter. Did she know? From 27 weeks onward, all I could think about was amniotic fluid. Make more, baby! I wanted my baby to have more than the 1.2cm they saw at that routine ultrasound.

No, she couldn’t know. She had just had an ultrasound the week before, maybe she was curious about her own fluid then.

“Well, it depends on the gestational age,” I said calmly. “At term we like it between 5 and 25. Amniotic fluid is very important. I know a few things about it.” I learned the hard way. I can tell you this: 1.2 is bad. Very bad. Babies need fluid to grow, to develop their lungs. When the fluid is too low, babies can die. Mine did. “Yours was 18, perfectly midrange.” What I would have done for 18!!

I was brought back to January, when I was still pregnant with Mabel. I had patient who had twins. She was due the day before me. The ultrasound in our office showed that her babies had low fluid at thirty-two weeks pregnant. “What happens if there is low fluid?” she had asked me. I told her how fluid is needed to help their lungs develop. The good news for her is that if this low fluid was real (we were going to get a specialist ultrasound to confirm), she was late in pregnancy and so the babies had had a fair amount of time to develop their lungs. The follow up ultrasound showed good fluid. It was a one-day fluke for her. She had her babies and they lived.

My patient in front of me today went on to explain that her cousin is pregnant, due within a few week of herself. They often compare notes, checking with each other to see who has what going on. Amniotic fluid had been part of that conversation.

I wanted to tell her everything I knew about fluid and why I knew so much. But that would have entailed the words “my baby died.” If someone asked, I would tell; however if no one asked, I would not volunteer the info. That kind of information should only enter the patient room if invited. Otherwise I feel like I’m saying Look at me! Look at me! My baby died! Nothing but awkwardness would follow. And the visit was not about me- it was about the patient. So I left Mabel out of it unless she was asked about.

She seemed satisfied with my answer. The dangers of oligohydramnios danced through my head, but never left my mouth. She left her appointment without ever knowing how much that simple clinical questions stirred me.

The chiropractor waiting room

I arrived early to the chiropractor in a surprisingly good mood. I still struggle with depressive thoughts and so having a day or even moment of mood levity is treasured. I had even texted a friend of mine just an hour before, “For the first time I feel a little hopeful!”

I signed in and said hello to the cheerful secretary. She has always intrigued me from the first time I met her. She was pregnant then, as was I, but she was carrying twins. I started at this new chiropractor in my pregnancy because early on I was feeling a bothersome change in my pelvis, especially after running. She came highly recommended by a friend of mine and her hours and location were super convenient. When I met her secretary I had asked, like a good midwife, when she was due. I soon learned that was a surrogate for another couple. I had written my grad school praxis about gestational surrogacy. The practice fascinated me and I told her that. I thought it was one of the most courageous, generous things a woman could do.

I became a frequent visitor after my low fluid diagnosis because the long weekend I spent in the hospital bed really screwed up my tailbone. In the two weeks following I went almost everyday and my problem was solved. While waiting for the doctor, I often chatted with this secretary, learning that she was carrying two girls, one of the babies was breech and how badly she want a vaginal birth. I overheard her once telling another patient how her doctor had told her it’s illegal to have a breech birth in Connecticut. I couldn’t help myself; I had to say something.

“No it’s not!” I piped up. “It’s totally legal. I’ve been present at breech births.” I had patients who come in fully with the baby’s feet hanging out of the vagina. At that point, best to deliver the baby breech. I’ve had patients who have fooled us, when we thought the baby was head down and when they became fully dilated we realized it was an especially head-like butt coming first. Some of those babies came out vaginally. I’ve had twins where baby A is head down and baby B is breech, and under those circumstances we sometimes consider breech birth. There are risks- mainly head entrapment (the head is the largest part of the body and so if the butt comes first you don’t know for sure the head will fit until it’s too late)- so usually we recommend a c-section if the baby won’t turn. But it’s not illegal.

“But it can be risky,” I backtracked, not wanting her to feel badly about her choice in doctors. “So most doctors recommend a c-section.” She had her babies vaginally around Christmas, after both girls lined up head down. I was surprised she was back at work a few weeks later, but then I remembered how she didn’t have those babies at home with her.

When I went into the chiropractor today she was behind the desk. My doctor knows the whole story with Mabel, but I’m unsure if the secretaries do. The other secretary, another cheerful, chatty woman, asked me once about Mabel after I had delivered. She asked whether I had a boy or girl and what I named her. There were no follow-up questions or condolences, so I assumed she didn’t know.

After I signed in today, I sat down and listened to her talk to another waiting patient about her son’s blueberry picking trip. Moments later, a woman walked through the door holding a baby carrier. She put it down in my full view as she signed in. I could see this little baby girl staring up at me- I guessed she was about six months, Mabel’s age. I took a few concentrated breaths as the secretary started asking about the baby.

“She’s great. Well, I mean, lately she’s a little monster!” she said looking at her daughter in a high-pitched singsong voice women use to talk to babies. “My girl, who has been sleeping through the night for the past two months, doesn’t seem…”

I didn’t hear the rest of the sentence. Tears came on hot and strong and I got up and walked out the door. I sat on the curb in the parking lot, letting the tears flow. That was supposed to be me. I’m supposed to be here with my baby. The woman with the baby in the carrier sitting next to the woman with empty arms. The contrast was too much.

I played on my phone (my standard go-to when I need to calm down.) and waited until another patient came out. As she passed me, she said “What a good idea!” For a moment I expected her to say how that baby’s presence was too much for her too. “The sun feels just so good out here.”

I nodded and gave a weak smile. I guessed the woman with the baby had been taken in by the chiropractor by then and so I returned to the waiting room. I took my seat wondering if the secretary had any clue what was going through my mind. She didn’t chat me up, telling stories of blueberry picking or asking about my life. Perhaps because my visible frown advised her to keep her distance. Perhaps because she could see the emotional havoc that just went down in front of her.