Wanting to create a comprehensive neonatal loss program for parents

[MT1980]

Hello everyone.

I work in a NICU in Michigan in a poor area and I am looking for ways to make our neonatal loss program better. I have been in our NICU about a year and have realized our neonatal loss program leaves much to be desired. We have no set program as to what to do for the family when we know an infant is passing, etc. I experienced a loss at 21 weeks approx 1 1/2 yrs ago which lead me to the NICU so it is my experience with my loss that drives me to take the pics, lots of hand and footprints as well as make a shadowbox for the family with the personal effects of the infant. Unfortunately, not many people know what to do and it all varies as to what is done and expected. An example is we had a 22 weeker pass away and no one even thought to take pics until the baby had been deceased for 12 hours. The rationale was that the mom didn't want pics so they didn't think they would need them .Later the mom did want the pics so they had to get the body from the morgue and take pics. This is unacceptable in my view. We don't have alot of loss but I wanted to design a comprehensive loss program as to what to do for parents, etc. This is a personal desire of mine and could use your views as well as any info you can send me. Thanks so much.

[Elvish, BSN, DNP, RN, NP]

I realize this is the NICU forum, and I am mother-baby/antepartum, but we still deal with fetal losses. Kudos to you for wanting to make sure families of babies that have died get the care and attention they need.

Are there local groups - knitting/sewing circles, church groups, or what-have-you - that would be willing to make little outfits or blankets for the babies to be wrapped in? Some parents may already have clothes for their baby, but many may not. My dear grandma, before she died, crocheted many a hat and blanket of all sizes for our babies that had died.

Would your unit be willing to invest in a good digital camera to take pictures of the babies? Alternately, you could check out www.nowilaymedowntosleep.org ...they do wonderful work and they are free.

What about little keepsake boxes? On my unit we have ones made of sturdy cardboard and painted over, where we put pictures, locks of hair (if there's any hair), foot/handprint cards, and the little hat/blanket/outfit we used to wrap the baby in.

Is there a support group for parents that have lost a baby? Maybe you (or another motivated parent) could start one. It wouldn't have to be in the hospital.

Just some ideas. Again, you are providing a much-needed service to people at a very low point in their lives. Bravo!

[babyNP., APRN]

Contact March of Dimes. They've got a lot of resources and they'll likely give it to you for free! That's how our unit started out.

[kangarooyou]

Hi :)

I am running a successfull parent support group meeting. We meet once a month, the hospital provides dinner. The hospital social worker and I have about 6 parents that come every month, and new parents who are currently in the NICU are invited to come.

In the beginning we were nervous about mixing up those famalies that had a loss and those that took their preemies home.....we did not know if it would work...

But it has and is flourishing.

The parents have made great friends. An example of how the mixing has been a blessing....

The H family lost their baby after 32 days in the NICU, they did not come to the meetings at first, when they started to come...the H family found out after about 9 months, that they had become pregnant again.....the group gave them a huge baby shower, the H family has gone on to make blogs and give their information to famalies who may be of need in the NICU. With this, other parents have been able to see that even through loss, they have been able to build and grow....while still honoring their child lost...which is really, really important.

We have a yearly candle lit memorial...and this year we are all walking together at the March of Dimes walk.

Sometimes, we invite community services to come in, like one month we had VMRC services come, they do developmental assessments and community referrals, and then we had a countywide rep come in with information about post partum depression. Sometimes we cry, always we laugh...and we learn from each other...I can not tell you how much they have taught me as a NICU nurse.

I hope that this helps...maybe you could ask to begin a group?

Feel free to PM me if you would like some suggestions on how to get started.