Grieving a perinatal loss

Elvish, BSN, DNP, RN, NP

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)

Grieving a perinatal loss

About Elvish, BSN, DNP, RN, NP

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