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 Telemetry, Case Management.

This was a great post. I had two early miscarriages years and years ago ('76 and '85), but on the anniversary dates every year I remember them and wonder what would have been. My first grandchild was stillborn at five months, and the nurses took lots of photos of him, wrapped him up pretty for the kids to hold and took photos of them together. My son has the photos with him of course, but I made copies of one and have it on my bookshelf with photos of my other newborn grandbabies. I think of him every December and grieve for him - he would have been 8 years old if he could have lived.

OP, I'm sorry for your loss and pray everything works out better for you this time.

Specializes in ER, Oncology, Preop, Recovery.

I am so grateful for this. I lost a baby at 27 weeks. It was heartbreaking. However, I had excellent, caring nurses who did all they could to help me. I was so thankful to be able to hold my baby and take home her ohotos and keepsakes.

One thing: even though I am a nurse, I did not even think about my milk coming in, so that was an unpleasant surprise. Education is important.

God bless you for all you do.

Specializes in ER, Oncology, Preop, Recovery.
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.

When I lost my baby, one of my nurses cried with me. I was not offended at all. On the contrary, I was moved and comforted by her caring. She was a great nurse.

I wasn't a nurse when after having three healthy children inside three years, (and waiting another 3) it was discovered that my next baby at 12 weeks gestation had anencephaly (no brain). Anencephaly is a neuro tube defect where the neuro tube (the spine) doesn't close completely 21-28 days after conception. I experienced everything mentioned above from the unkind mindless comments to the sonographer who put her hand on my leg when the baby waved at us from the screen at 14 weeks and I started sobbing. I chose to carry this baby to term, to have a normal birth (i was offered a c-section at 33 weeks), to video tape the birth and to develop a 21 point birthing plan to give the OB floor and my OB doctors (they worked on rotation so I didn't know who i would get). the plan was reviewed by all the nurses and the head Nurse of the OB floor 3 months before my scheduled induced labor (YES!! education is so vital = one of my points was having my breasts wrapped so the engorement wouldn't hurt long).....the baby was due on Mother's day 1993. (I chose to induce AFTER Mother's day due to my research showing a majority of babies with anencephaly not inducing labor on their own) There are no words to describe the grief of "taking" my baby to church that weekend.

The posts above are true - every person, male and female, grieve differently and this needs to be respected. The only words that help are I'm so sorry, a hug, a touch of the hand and if you are close to the person just SHOWING up and doing their laundry, dishes, lawn work, etc....no words, just actions of care.

Val was the name of the nurse who helped deliver Kristina Marie. Kristina had no muscle tone or respiratory effort. I didn't want the umbilical cord being cut to be on video but of course it is....her lifeline severed. She was baptized by my mother (grandparents suffer a double loss - a grandchild dead and having to watch their own child suffer) and I held my baby as her heartbeat slowly faded. Val was with us every step of the way. She washed Kristina off, put her in a diaper, covered her head with a cap, found ink pads to take her footprints with - treated her with respect and dignity. I heard that another nurse had run from the room crying...I wish I could have comforted that nurse. We (the traumatized) become the comforters and after losing another child seven months later to a miscarriage (two sperm hit the egg at the same time and the baby had three sets of chromosomes instead of the normal two - a condition where born children can die months old) - I learned that these experiences made me a more compassionate and less judgmental human.

I pushed away grieving for this miscarried child as well - a whole year. Later I wrote him a poem, went back to the hospital to get him a newborn knitted cap and buried his remains on top of his sister. The posts are correct. We never get over anything as I recently told a mother who's teenage son was murdered - we get through it but never over it.

The six months I was "Taking Kristina to term" I found help from the support groups AMEND and SHARE. I found other parents who had done what I was trying to do - survive being a walking ICU for my baby. I talked for hours with these parents and will forever remember their love and support. This year Kristina would have been 18 and would have loved her new nephew, her brother who is a Marine, her cum laude sister and mischievous little brother who was born later the year I miscarried.

I am now a nurse and although I am not an OB nurse - i have such respect for what they have to deal with daily. Know that there are two groups - two roads that people are free to walk down. Heartbreaking Choice supports parents who chose to terminate a wanted pregnancy and Abiding Hearts (the one another mother and myself started) for parents wanting to continue a pregnancy after a fatal or non-fatal prenatal diagnosis. Let there be no judgement only love and support for each person has a different Quality World Picture (William Glasser) of what they can cope with for the rest of their lives. This is my goal. This year. To educate and aid healing in all its facets.

Elvish

Beautifully written. Thank you for putting into words things that so many of us in OB have felt but not able to articulate as well as you.

Specializes in LTC, Med-Surg, Special Care, Postpartum.

I am so sorry to hear about everyones loss. I too lost my son at 20 weeks gestation September 3rd 2010. He was orginally due Jan. 14th. So far it has been an emotional rollercoaster. Always thinking about what we could have been doing and where we should be at. I identify with the feelings that were previously mentioned. An the comments i got where the exact same, and it didn't make the healing easier. Right now i keep receiving coupons, formula and baby magazines and it just reminds me of my son and how he is not here. The night before I went into labor i felt him move for sure and i remember laughing and talking with my grandmother. Because it made me laugh. Then the next evening i went into labor...I have photos and other memorabilia. I got to spend as much time with him as i wanted. The nursing staff was excellent in being there for me and the doctor who delivered my baby. I am forever grateful for how they took care of my husband and i in our time of need. I wear my Peace bracelet in memory of my son everyday. Since i miscarried, 4 of my friends also lossed their babies in different stages of pregnancy. Perinatal loss is almost one of those losses that are not spoken about often but the support of other couples that went through it helps a lot. I just want to say thank you to all the L&D nurses that are there for us through a difficult time, everything you do means a lot to every life you touch.:hug:

I'm a mother of three, nearly of five...experienced miscarriage before the 12th week on my second pregnancy...two years ago i had another one and failed due to a blighted ovum...i'm now 36 years of age and suspecting another pregnancy that might end up to another miscarriage again due to spotting..kind of fearful to check it again this week with an OB doctor..it was really more painful experience having spontaneous abortion...don't want to have that same feeling again...physically and emotionally...great to have family and friends to support...

Dear CancerJuly,

I'm sorry for your past losses. The best thing you can do currently, is contact your OB doctor. You will have answers quicker if you follow through and communicate with your doctor. He or she will most likely send you for an ultrasound. I've been in your shoes, multiple times. Blighted ovum as well, for some of them. I am 40 (born in July too) and may also be pregnant. Due to my past experiences, I'm to contact my OB as soon as I find out I'm expecting and after testing will be given progesterone suppositories that are administered for 3-4 months in order to assure sufficient quantities for placental needs.

I hope all goes well for you.

Sincerely,

Orange room

Specializes in ED.

I had two miscarriages, the first one was while on deployment in Cuba Sept '95. I can tell you what NOT to do when someone is having a miscarriage (didn't know I was pregnant). I was living in temporary accomidations set up by the military called "hootches". So many of them it was probably a good 1/8th of a mile to the bathroom/latrine. I would stop on the way and try to stuff more things (anything I had that could soak up the blood) down my clothes because I was dripping on the ground, and stopping along the way to vomit. Many people just walked on by after seeing me. Only one girl, a roommate, helped me to try and find other help, which took a very long time of walking around camp to find anyone willing to drive me to the hospital. The hospital staff, because I was a strong woman and not passing out or in hysterics, thought I was faking. I was threatened with a catheter since I couldn't urinate to provide a sample before anything else was done with me, and I couldn't urinate due to all the trips to the bathroom, there was nothing left. Then after being catheterized (in a room with insects crawling all over the floor) the remains were removed, placed in a container and left in the room with me while the nurse and doctor left. I had nightmares, drank heavly and was suicidal for many months/years after this happened. When I asked to be sent back to my home base, I was denied, even though I was not able to do any real work as a mechanic due to the depression. Writing this still sends back a host of memories that I have fought past but still come back.

I'm not sure why I'm writing all of this now. Perhaps as a reminder to others who are also in health care to not become so numb to our jobs that we cannot be compassionate with our patients. Just remember that arn't just going through a medical problem, their dreams, their vision of themselves being a whole and healthy person have just been crushed without any seeming recourse.