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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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?