Grieving a perinatal loss

Thoughts on helping families who are grieving an expected or unexpected perinatal death Specialties NICU Article

When I tell people I'm a mother-baby nurse, the usual reaction is, "Oh, what a great [fun, exciting, happy, insert positive adjective here] job that must be!" Sometimes, that's a true statement. But what most people don't realize (or if they do, they don't mention it) is that when bad things happen, they are very very bad. Families and staff alike need support, though each needs a different kind. This article (part 1) is about supporting families through what is likely one of the most difficult times of their lives.

Whether it's a miscarriage (loss of a pregnancy before 20 weeks gestation), an ectopic pregnancy, an intrauterine death confirmed by ultrasound before delivery, or a neonatal loss wherein baby is born alive but dies later, perinatal loss is devastating for families. What to do when what is supposed to be a normal event ending with a healthy baby ends with empty arms instead?

First, recognize that nothing anyone says is going to ameliorate the loss for that family. Losing a baby at any gestation leaves an emptiness that no words can fill. Some things NOT to say:

  • "Oh, you are young, you can have more babies."
  • "Better to lose him now before you really got a chance to know him."
  • "There was probably something wrong with the baby anyway."
  • "At least you lost the baby early before you had a chance to bond."

These things minimize the very real sense of loss the family feels and can undermine the nurse-patient relationship. After I miscarried my baby several months ago, I remember wanting to slap people silly for saying things like this to me, even when I knew they meant well. What I've found works best is a simple "I'm so sorry". This acknowledges people's loss in a simple way and gives them room to respond. After my loss, what helped more than anything was a simple note from a friend: "You guys are in my thoughts/prayers", or when coworkers would stop me in the hallway and just give me a hug without saying anything. (Everyone's different; I'm just saying what worked for me.)

Second, acknowledge people's need to grieve and express emotion differently. Some people will be vocal, others will not. Some will want to see and hold their baby (if the loss was at a gestation where this is possible), others will not. Some people will change their mind several times. Either way, people need to know that their reactions are normal and okay. Depending on the family and the situation, I have told patients that no one will force them to do anything, but that sometimes seeing the baby will help them incorporate his life into theirs in a meaningful way. In any case, whatever people decide needs to be respected. We do take pictures of the baby and place them in a keepsake box (along with some other items) so that if they decide to look later, they can.

I have had families that did not want to see their baby at all, others who initially did not want to but later asked to see, and others who spent their entire stay with their baby in arms. We've had parents brush and style their baby's hair and change their diapers as if they were alive. All of this is perfectly normal and appropriate. Allowing parents their space to say goodbye in whatever way they choose is so very important.

Addressing families' spiritual needs at this time is also crucial. Hospital chaplains are a fantastic resource in this time; families should also know that if they want their own clergy or other spiritual leader to come and be a part of their time, that is welcome too.

Fourth, education on what to expect after a loss is extremely important. In the immediate aftermath, this isn't the priority, but it does need to be addressed before families go home (which in some cases is less than 24 hours after delivery). Physical AND emotional aspects need to be addressed. Women need to know how long to expect bleeding and cramping, and how to relieve the discomfort of breast engorgement if their milk comes in. People need to know that grieving is not a linear process; there will good days and bad days, and sometimes the grief will come back at unexpected times/places. As well, everyone's grief process will look different; some people will be vocal and want to talk, while others will need space to process things. Couples especially need to know that just because one partner is less expressive, it does not mean they aren't grieving or don't care. Sometimes counseling or support groups can be helpful in these situations.

There is so much more to say on this topic; this article is by no means exhaustive. Commenters, feel free to add your own tips or things you do to help families with their perinatal losses. If you've experienced a perinatal loss, my heart goes out to you and I do hope for your healing and peace.

Here are some additional websites/resources for nurses and families:

Dealing with grief after the death of your baby | March of Dimes

www.nowilaymedowntosleep.com (Fantastic professional photographers who provide free remembrance photography to parents who have lost a baby. Some photographers only do portraits above a certain gestation, though.)

Grief Resources | Healing Hearts Baby Loss Comfort (very comprehensive Q&A and information sections)

Grief Watch - Home page (general grief resource, not specific to perinatal loss, but worth checking out)

Specializes in Community, OB, Nursery.

Unfortunately, the people whom I informed of my situation were determined to get me to admit that I was "grieving" or "holding back." Some tried to encourage me to name the child, or to celebrate its would-be birthday every year in order to keep him/her close to me. Not only was this an irritating and hurtful reminder of a bad situation, it also caused me to call into question my own feelings about the situation as well as the humanity of my reaction. I spent a long time thinking about the situation before coming to the conclusion that *I* had done nothing wrong, and I didn't owe anyone any specific sort of reaction.

I guess what I'm trying to say is that when you're dealing with a woman who has had a miscarriage or lost a baby, make sure you really listen to what she feels, and don't assume that you know how best to help her "grieve" if such a thing is even necessary in that particular case. You could wind up doing more harm than good.

You have an excellent point, KnitWitch. We deal with women who've lost planned and unplanned pregnancies, wanted and unwanted. I do my best to let women deal with it however they want. And I have had women who've verbalized that they felt more relief than anything else, like you mentioned. We don't make anyone do anything at my place. If mom wants to name her baby or not, that's up to her. Everyone deals with a loss differently - and if relief is what she feels, then I am not about to make her feel guilty about that, even if my own experience with a loss was different. God/the Universe/Mother Nature (or whatever/whoever you think decides these things) knows how each of us will react and what each of us can cope with. Again.....great point.

Specializes in Community, OB, Nursery.
Thank you for this. I lost my baby last month at 12 weeks gestation(missed miscarriage...no bleeding/spotting, no signs of any problems)...we'd had a good ultrasound and had seen what looked to be a healthy baby at our NT Scan, and then there was no heartbeat the following week. I had an excellent nurse the whole day when I had to go in for my D&C(I had to go to The Birthing Center for my D&C if you can believe it. Why they don't do it in GYN surgery is beyond me), and that made such a huge difference in what was one of the worst nightmares of my life. I think you offer practical advice in a really challenging area of your type of nursing.

A death certificate was filled out, and I was told the fetal remains would be buried in a cemetery. I liked these two things because they acknowledge that what we had here was a loss of life, a loss of a baby. Most people have been great(and so so many people have gone through this. They come out of the woodwork when this happens), but I've also gotten a lot of the "It's God's Will," "you can get pregnant again," etc. I think many people don't know what to say, but I agree that "I'm so sorry" or a hug works well.

Thank you again for addressing what seems to be a subject that doesn't get discussed enough!

Thank you for such a heartfelt post. I am so sorry for your loss and am glad you had a nurse that was there to make a difference for you. I'm also glad that your baby was taken care of with the dignity s/he deserved.

Wonderful article! Everyone does experience loss differently. It took me years to understand why I turned into an emotional wreck every March. I had suffered three miscarriages, two of whom were due in the month of March. Once I realized why, it was easier for me to cope with and look for other positive aspects to focus on, and look beyond the negative of that month. No matter what I did, that month would still come, every year. I had learned to remember fondly, not with a heavy heart. March is coming up, and I'm alright with that. Not sad, but coping...even after 18 and 17 years.

Well done! I did perinatal loss counseling for 14 years, your information is so helpful to the parents. I still have contact with some of these parents and it really improves their healing process. Most areas have support groups - HOPE, SHARE, etc. that are very helpful for parents returning home without their babies.

Specializes in LTC.

I work LTC as a nurse so this is not a situation that I am dealing with at work.

But, my first pregnancy was an ectopic, that I also almost died from ~ denial is a powerful thing. It had ruptured. I was given 2 units of blood post-op.

I would have had twins in July of 1994. Fraternal, one did implant in the uterus but due to the trauma involved with the ectopic I lost that one also.

I was at work when I went into shock, a new LPN in a LTC facility less than a month form passing my nclex-pn. I passed out in the bathroom.

I don't know their sex, who they looked like but it still hurt (s).

I was told I had at best less than a 50% chance of having kids, but being 23 at the time things may work out for me.

That was a cold, harsh conversation to have during my discharge.

This article is wonderfully written, but doctors stand to read an article on it too.

Today, I have two teen-agers.

My daughter was conceived in July of 1994, while I was on the pill and down to one fallopian tube.

Specializes in pediatrics.
Wonderful article! Everyone does experience loss differently. It took me years to understand why I turned into an emotional wreck every March. I had suffered three miscarriages, two of whom were due in the month of March. Once I realized why, it was easier for me to cope with and look for other positive aspects to focus on, and look beyond the negative of that month. No matter what I did, that month would still come, every year. I had learned to remember fondly, not with a heavy heart. March is coming up, and I'm alright with that. Not sad, but coping...even after 18 and 17 years.

What you have shared resonates with me as well. .only my "loss" was my twins being born at 24ish weeks gestation. Both survived with disabilities as a result of complications following their births. One of them is very very severely disabled and medically fragile. She has really suffered - 5 months in the NICU with every horrible complication imaginable. And almost 25 years old, she is completely bed-ridden (on an air mattress that rotates her from side to side d/t severe cerebral palsy), has had so many surgeries, status epilepticus, profound MR. Her twin fared better, but has some pretty significant emotional issues and mild CP. The birthday time just creates a whole lot of anxiety for me. Preemie miracle baby stories just about send me over the edge (follow them up in 10 years to see where they are really at!) The twins births and subsequent NICU stay and aftermath were really like my personal 9/11 and Hurricane Katrina. I have been on several NICU parent blogs, and it seems pretty universal, especially among parents whose kiddos were in the one pound range and had long NICU stays and who ended up, as most do in this gestational age range, with life-long care needs. Perinatal PTSD isn't really talked about much, but I am sure it's prevelant among most of us who've dealt with various pregnancy "losses".

Specializes in pediatrics.

Article on Perinatal Post-Traumatic Stress Disorder. Very good. Loads of studies cited at the end of the article on various pregnancy losses that can cause PPTSD. http://www.nature.com/jp/journal/v26/n9/full/7211562a.html

Specializes in Alzheimers, elderly, and some hospice.

Thank you so much for your article and sharing with us such a painful time in your life. When I was 21, only six months after getting married, I had to have a complete hysterectomy. I cannot agree more about people's "helpful" comments during a time of grief. I was told, "you can always adopt" and "at least you don't have to worry about raising ungrateful children". I really just needed to hear, "I'm sorry this happened" or "I'm praying for you". That has been a little over 20 years ago, and I still am not completely "over it" like so many people told me I would be. As a nursing student, it is my greatest fear to be in my OB rotation and someone lose a baby. I am planning to go into Hospice, and have helped some of my closest patients pass away (as a CNA). I hope my previous experiences has prepared me to help my patients and their families deal with grief. However, when it comes to perinatal loss, I am very concerned that I would cry with the patient. I still can't watch a movie on TV about this without crying! Hopefully, if placed in that situation, God will give me the strength not to cry. Your article really helped me to know how to help a mother experience her loss. Thank you!

Excellent article! Thank you for sharing. I can definitely relate to Knitwitch as well. After I got out of a bad relationship, I found out I was pregnant. Only being 20 at the time, and a student, I was devastated. The only thing I knew at that time was that I was not ready to be a parent, nor did I want to. I only told my mom and sister about it, and immediately made an appointment at family planning for an abortion. That week of waiting wreaked havoc on my mental status. I kept going back and forth, and wondered why I did feel worse about what was about to happen. The day before the procedure, I miscarried. After I felt such a sense of relief, and then guilt for feeling relief! It was an emotional roller coaster I hope never to repeat. I tend to deal with grief head on, and then put it to rest. I don't dwell on the past, or what could have been. I realize now that my way of dealing with things works for me, but others need to express themselves differently. There's no right or wrong way, and no one should feel guilt for it.

WOW!! After all these years, I feel like there are people (more importantly colleagues) who know just how I feel. After 4 lost pregnancies (one at 18 weeks), I thought I would never be able to have children. With fertility care, I know have two beautiful children (ages 15 and 13) who are nothing short of a miracle to me. My personal struggles are the EXACT reason I did not go into this type of nursing. Unlike the majority of the population, anytime I hear of a nurse in the NICU or in labor and delivery, I never think "what a fun job." I always think of the tragic circumstances they must witness. I think you guys are fantastic and very necessary. After my losses, I never seemed to have nurses who offered any kind words, I was basically ignored. I don't think any of them knew what to say - I felt so isolated. With my last miscarriage right before my D&C, the OR nurse was at my head, placed her hands on either side of my face and told me of her losses, told me I was in her thoughts as tears poured down my face; it was incredibly meaningful. You guys keep up the good work - kudos from me!

WOW!! After all these years, I feel like there are people (more importantly colleagues) who know just how I feel. After 4 lost pregnancies (one at 18 weeks), I thought I would never be able to have children. With fertility care, I know have two beautiful children (ages 15 and 13) who are nothing short of a miracle to me. My personal struggles are the EXACT reason I did not go into this type of nursing. Unlike the majority of the population, anytime I hear of a nurse in the NICU or in labor and delivery, I never think "what a fun job." I always think of the tragic circumstances they must witness. I think you guys are fantastic and very necessary. After my losses, I never seemed to have nurses who offered any kind words, I was basically ignored. I don't think any of them knew what to say - I felt so isolated. With my last miscarriage right before my D&C, the OR nurse was at my head, placed her hands on either side of my face and told me of her losses, told me I was in her thoughts as tears poured down my face; it was incredibly meaningful. You guys keep up the good work - kudos from me!

Dear Robin,

I am sorry for your losses. It's unfortunate that you feel you weren't cared for appropriately the first three times you suffered miscarriages. Luckily you found a sympathetic nurse with your last. There are a few nurses who get emotionally involved with their patients. There are many who don't get attached at all. I am a labor and delivery nurse. I absolutely love my career. We are exposed to both wonderful and horrible outcomes. Usually things work out well. The majority of the nurses on my unit are sympathetic. Probably why they were hired and stay on my unit.

There are many different personalities in the nursing field. I'm sure you see all types as well, which ever unit you work in. Some are just better at caring than others. Some just get the job done. No more, no less. 7a-7p and they're out. There's usually a reason why a nurse is interested in a particular unit. In DOSA (day of surgery) surgical settings, there's not a lot of time to forge a relationship between pt and nurse. Patients may be made to feel like "Next." In and out.

I, too, felt numb and raw after three miscarriages. My tiny miracles were not meant to be. No one attempted to forge a short relationship with me at the time (I wasn't a nurse at the time). I was sad. They had a job to do. They're job did not involve my mental state. However, those experiences shaped me...and you. We both are better nurses and can sympathize with our patients because of what we've been through. We treat others how we would have wanted to be treated. We teach, a lot.

You and I are similar and different. My personal struggles are the exact reason I went into labor and delivery. I teach what was not taught to me. I assist others and inform them what to expect, every step of the way. I am very passionate about what I do and hope to do it a long time. I can sympathize with miscarriage, c-section and lady partsl deliveries. I've had them all. I teach about sections and lady partsl deliveries. You never know which way baby is exiting until they're out.

Technology and Science are amazing, aren't they? Congratulations regarding your two miracles!

Specializes in OB,HH.

I am very concerned that I would cry with the patient. I still can't watch a movie on TV about this without crying! Hopefully, if placed in that situation, God will give me the strength not to cry. Your article really helped me to know how to help a mother experience her loss. Thank you!

candied: you will cry and why wouldn't you? when I was a very young new L&D nurse I had an experience I will never forget. A woman had a miscarriage of a very tiny 16-18 week baby that literally died in my hand- the Doc handed him to me to remove from the room at the parents request and I stood outside the utility room wondering what in the world I should do now while I watched this tiny perfect little being try to gasp; I could see the heart stop.......... I was devastated. a very experienced older nurse practically patted me on the head and casually said "you will get used to it, dont cry"............. all I could think of was: God, I HOPE NOT. The day I dont cry over something like this is the day I should get myself out of nursing.