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Grieving a perinatal loss

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Specializes in Community, OB, Nursery.

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

Grieving a perinatal loss
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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)

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VivaLasViejas, ASN, RN

Specializes in LTC, assisted living, med-surg, psych.

As a mother who has suffered both miscarriage and neonatal loss, I couldn't agree more with what Elvish has posted here. Pregnancy loss at ANY stage is nothing short of catastrophic, and twenty-seven years after my Melissa died, I've yet to meet anyone who completely recovers from such an event. We get through it, and eventually we get past it, but we never, ever get over it. Someone is still missing from the family table, even if he or she never came home from the hospital. And we never cease to wonder what our children would have been like---indeed, who they would have become---if they'd lived.

If I could give a thousand kudos to you, Elvish, I would. You have written wonderful and wise words, which I know come from the heart of bitter experience. Bless you and thank you!

tralalaRN

Specializes in pediatrics.

Another aspect to this, if I may add, is perinatal post-traumatic stress disorder as a result of traumatic birth experiences, often relating to lengthy NICU stays, resulting in either death of the infant, or survival of infant with significant impairment. I've been involved in several parent groups and neonatal blogs where this is a very real issue for neonatal parents - reliving the birth experience, avoidance of things associated with neonatal (preemie miracle baby stories for instance). .

Elvish - - excellent article. No one can possibly tell someone else how to grieve appropriately regardless of the circumstances.

I have been through a variety of experiences, and the best thing for me was hugs and simple acknowledgement.

Thank you for writing this article.

Best wishes.

Elvish, BSN, DNP, RN, NP

Specializes in Community, OB, Nursery.

Thank you all for the positive feedback. My current pregnancy came right on the heels of - as in, the month immediately following - a miscarriage after we'd been trying for nearly a year to get pregnant. As much as I'm glad to have a healthy pregnancy and as best I can tell be carrying a healthy baby, I still miss the baby we lost. I still think about the fact that her due date is coming up in a couple months, and wonder what it was that I lost. I still cry sometimes because I miss her (well, as early as the loss was, who really knows, but in my mind I was carrying a girl). Heck, the tears are coming right now just thinking about her.

My OB nurse brain knew that an early-gestation miscarriage usually happens because of anomalies or genetic defects incompatible with life, but losing that baby still made me feel like my body had completely failed me. I felt like a walking tomb. There's just no way anyone can know what that empty, barren desolation feels like unless they've been there. So many women came to me, women that I never knew carried that pain with them, with support and hugs. Probably what helped more than anything was not even things that anyone said, but seeing these strong women who'd gone through the pain of a loss and survived. Knowing that better days lay ahead, even if I never got 'over it' as Marla said, was what helped me get out of bed and do what I had to, even if at the moment I was on auto-pilot.

Again, thanks so much for the positive feedback. :redbeathe

NotReady4PrimeTime, RN

Specializes in NICU, PICU, PCVICU and peds oncology.

I've experienced a perinatal loss of a very different sort: I relinquished a newborn for adoption. A baby boy I never saw. Part of me still grieves that loss - despite it being a choice I made 34 years ago as a very unprepared teenager - and often wonder who he looks like... where he is... what his life has been like... whether he has been loved... I hope and pray that the choice I made for him was the right one for him, knowing that I'll never know. And life goes on.

Thank you for your article. As a nursing student (and CNM hopeful) I hope I will not (but expect that I will) have to help parents deal with the inexplicable pain of the loss of a child. I lost my father when I was 18, and the oncology nurses that held me for hours without saying a word meant the world to me, even if I can't remember their names now. Somehow they just knew how to respond in the way that helped me best at the time, and I will forever be grateful for that. Thank you for talking about grief, and awknowledgeing that everyone's grief is different for every loss. I hope that my own experiences will help me be a better midwife when the time comes, and thank you for the resources so I can be a better student.

P B and J

Specializes in Nursing Supervisor.

What a wonderfully written article. As a mother who lost a child myself, I heard many of the same words--"you can just have another," and "at least you didn't get to know him before he died," or one that bothered me the most, "God needed/wanted him" (Grrrrrr....). If they had to say anything, I'd rather have heard "I'm so sorry, would you like to talk?"

I especially liked where you said we get "through" it, and "past" it, but never "over" it. So true, and very well put.

The website that I finally found and came to rely on was www.misschildren.org a site for anyone wanting to connect or even just read others' experiences, anything to know what you are feeling is normal.

Almost 11 years later, I'm still not over it, I never will be, but each day has gotten easier to get through, and now I can finally think of my son without being overwhelmed with sadness!

cayenne06, MSN, CNM

Specializes in Reproductive & Public Health.

I just wanted to say that I have attended almost 200 births. I lost a baby (20 weeks gestation), almost lost a baby (prolonged shoulder dystocia) and lost a mom (renal failure, crash c/s- I was present as a friend). I worked for a year at a women's clinic and assisted women during their terminations. I am also a gestational surrogate, and the mother of the babies I am carrying has lost 6 babies.

Perinatal loss is never easy, regardless of the circumstances. As care providers, it is an honor to be present with families through these difficult circumstances. Despite that, it sucks royally.

KnitWitch, ASN, RN

Specializes in Emergency/Trauma.

You've written a very good, very touching blog here that raises a lot of good points.

I would, however, like to say something from the other side of the coin, as a woman who miscarried very early on in an unplanned pregnancy.

I told very few people of my situation, and the ones I did tell I made very clear I wasn't sure I was going to keep the baby. When I miscarried in my 10th week, there was such a sense of relief that I didn't need to make a very difficult and life-changing decision. I was happy to be able to move on with my life.

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.

What a wonderful post. Pregnancy can be the absolute best (or worst) thing that happens to a couple.

I wish our culture somehow communicated better about pregnancy. I meet women who think it's always rainbows-and-sunshine, thanks to wonderful American technology. Seems like absolutely nobody prepares them to the risks, the possibility of perinatal loss, or the possibility rare-but-serious complications will force them to choose their live or the the fetus'. The "joy of birth" videos I found only make it worse: severe pain & long labor, babies with poor APGAR scores, and emergency c-sections are always somehow left out. Women may have no idea this could happen, much less have developed any plan or coping skills. And because those around them are out of touch with the pregnant woman's loss, they really don't understand.

My heart really goes out for the women who, though no fault of their own, are faced with removal of a dead or dying fetus. They face abortion protesters. Forget having a support system - friends may shun them. It can feel embarrassing or shameful. Some get death threats or get called a "baby killer". Isn't it hard enough to deal with the fact the baby will never be born alive... now they're blamed for it. Our society is so emotionally disconnected with what pregnant women go through.

As a whole our society needs to stop telling pregnant women how they should feel or what they should do. If a woman experiences a perinatal loss, it's up to her and her alone how she grieves. If a woman's baby is born alive but with serious defects, she may be grieving the loss of what her child should have been. Not all pregnancies are wanted, so some women grieve the loss of their less complicated lives. But whatever we think the woman should be feeling, we have no right to impose our own feelings and beliefs on her. No, she can't "just get pregnant again" and forget about what happened.

sistrmoon

Specializes in Oncology.

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!

Elvish, BSN, DNP, RN, NP

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.

Elvish, BSN, DNP, RN, NP

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.

INLPN93

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.

tralalaRN

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".

candied

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!

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