wow, we've talked about this - alot. I didn't have the NICU experience, but here's my thoughts.

1. Medical information for mum. In a take home package. How long will you bleed, what should you be concerned about, and yes, julia's information on how to stop lactation.

2. Send the public health nurse for the 3 day visit. My milk had come in, and I was desperate and heart broken, and my follow up appointment with the OB was 6 weeks away.

3. There is a special place in hell for the nurse that walked into my room at discharge and ran through her pre-printed form for mother's of living babies, and said "Well, I don't need to tell you about shaken baby syndrome or check your car seat".
Umm, yeah, thanks.

4. Follow up. Have the social worker call me in a few weeks. To see if I have questions.

There are two things that stand out in my mind. The lady who called personally to invite us to the infant bereavement support group. And the card I received from the hospital nurses (signed by the actual nurses themselves) that said, "When it seems like everyone else has forgotten...we remember." I think the reason these two things are so dear to me is because they were personal...not some pre-printed form/booklet given to me. Sure, I read those pamphlets, etc., but I couldn't recall a single thing in them if my life depended on it. The human connections were the most important.

Kate, thanks for posting this. I've gone over this and over this in my mind a million times. I was quite disappointed in the way in which things were handled the night of Myles' death. I've been pissed off that his primary nurses weren't working and that he was being treated by some young, inexperienced nurse who didn't seem to know quite how to handle things. Sure she was kind and seemingly compassionate, but she did so many things "wrong" (well wrong to me). Admittedly the follow-up has been good, but the night of his death could have been handled differently. Here are my suggestions:

1. DO NOT make parents feel rushed when they are spending time with their deceased child. Even go as far as to express that they SHOULD take all the time they need. I felt like after 2 hours we were inconveniencing them by being there, so I felt rushed to leave. I regret not spending more time with Myles after he passed and wish I would've been encouraged to spend more time with him.

2. Offer for family members to come into the NICU to hold the decased baby and say their good-byes. This wasn't offered to us and in our state it didn't even occur to us to extend an invitation. We had several close friends and family there with us at the hospital when Myles passed and all have said they would've loved to hold Myles and see his precious face without all the tubes/tape. This is among one of my biggest regrets!

3. Make other offers to parents to do things with/for their baby: make additional hand/footprints, dressing the baby, bathing the baby, taking hundreds of photos, etc..

3. Repeatedly make offers of things. Do not just offer something once. My husband and I were in a state of complete and utter shock, so we said no to many things offered which I now regret. Had the nurses offered things more than once and/or mentioned that other bereaved parents were grateful for these things we may have taken her up on the offers.

4. Provide an environment outside of the NICU where parents and family/friends can spend time with the baby not having peering eyes on them. I felt like all the staff were watching us and felt like we were under a microscope. Sure they closed a curtain, but they were still there. I would have liked to have complete privacy to talk to my son, kiss him, cuddle him without everyone listening/watching.

5. HAve the nurses explain what will happen to the baby when you leave them at the hospital as most parents probably don't think to ask, but may later wonder/worry. No one told us where Myles would go or what would happen to his little body after we handed him over. I spent so many hours wondering and worrying about what they did with his body. Was he clothed? Was he wrapped in a blanket? I had horrible visions of his tiny, naked body in a box somewhere. It tormented me for days until I was able to see him at the funeral home before he was cremated.

Be open to the fact that some parents won't grieve the way they're "supposed to."

Some parents don't want to see or hold the baby and don't want to be asked "Are you sure?" or told "You can always change your mind."

Some parents don't want every single nurse who stops by to say "I'm so sorry. What's the baby's name?"

Some parents don't want a memory box or other physical reminders of the baby.

Some parents don't want social workers stopping by their hospital beds to talk about grief.

Some parents don't want invitations to bereavement groups.

Some parents really, really don't want to hear that "Many moms do X" or "Some families find comfort in Y."

In fact, the hospital I was at did very few of these things. They pretty much left me alone with my grief, which is basically what I would have asked them for had I been in any shape to formulate a request.

The hospital we were at is an hour away, I did go in and they found someone for me to talk to, but honestly, they don't have any kind of support group. Hospitals that are in "draw areas" need to be very aware that their rural/small town patients may not be back simply because they can't get back for things.

Sometimes things just don't register. I should have made the **** doctor wait. The nursing sister and the charge nurse were in the room when I had my mini-breakdown before prepping for surgery, they said we could wait if I needed to, and I wish we had.

Video with sound, or even a tape recorder, or heck, my cell phone could have done it if I'd thought of it - something - Dad was needing to hold her because I couldn't, laid out on the table being stitched up, I am so grateful for the photos that were taken but she cried and we could have recorded that too.

Do not make a big deal out of NOT giving pain medication. I NEEDED to be alert, I needed to be there, and honestly, I needed the pain to remind me that she was gone. If mom is asking NOT to be medicated, and seems to be medically ok otherwise, don't force the issue. Undermedicating is only a problem when the patient needs pain relief and is not getting it, not when the patient doesn't need relief.

There needs to be some kind of discharge class or something that you CAN go to if you want, though not necessarily one that you have to go to. I know HIPAA makes things like this problematic, but you know, when they send you home with a live baby, you get a little meeting for some transition time, some time to process that you'll be dealing with this on your own now. With Aeryn, it was like "Ok, discharged, bye, see you. Call your OB/GYN if you get a fever."

Something for fathers. I don't know what. But my husband had a really hard time because he felt bloody useless, he was constantly up fetching me cups of tea and the like because at least he was doing something.

i think perhaps a few more available and less-stunned social workers might be in order, the kind who can sit down and look at you and say "how you doing?" and make you want to give an honest answer. and they could say, "we offer a, b, and c services if you're interested and this is the followup procedure which we will initiate, but only with your permission." clear, concise, offered, followed through. it wouldn't have to be much.

the rest? the "booklet of normal feelings"? the handwringing from medical staff and social workers who made me feel like i ought to comfort them? the lack of calling when they said, "we'll call"? that, i disliked. i would have felt more supported being respectfully left alone.

I felt our experience was handled as well as it could have been. I have been so grateful for that. Some things I remember;

The hugs, empathy, and genuine concern from our nurses and doctors.

The beautiful memory kit, with everything used for Charlotte, her handprints and footprints, and a special note from her NICU nurse.

My obstetrician calling me at home the following week.

The big hug from my MFM when I ran into her at a bookstore two weeks later.

The public health nurse called a couple of days after I got out of the hospital, then visited for a couple of hours a day or so later. She called again three weeks and again two months later.

The hospital has an on-staff psychologist who specializes in babyloss and infertility. She came to see us in my hospital room, then called us after I got home. We still see her every two weeks or so.

The night Charlotte was born, we were given as much time as we wanted with her, with as many visitors as we wanted. When I was exhausted and had to sleep, the NICU nurse told us to buzz if we wanted to see her again during the night. About 530 in the morning we had her again. That nurse came to visit us the following evening as well, just to chat, and helped us with the initial preparations for Charlotte's memorial service.

I was in the hospital for over a week following Charlotte's birth, and as days went by I became paranoid that I couldn't remember what she looked like, that my memories were too fuzzy. I was so anxious to get out of the hospital so I could visit her at the funeral home before she wouldn't be able to be seen. When I told my OB my concerns, she arranged (against hospital policy) for me to be able to leave for the afternoon to visit Charlotte. I will always be grateful for that.

Like Niki, I wanted to know exactly what happened to the body. I knew she was going "downstairs", but I didn't know if she had clothes, was warm, etc. I worried about that until the funeral home picked her up.

The only thing I would have changed is that I would have liked to have had more resources available to me when I was in the hospital. Whe had the token grief pamphlets, but I was itching for information about the disease that had just taken my baby. I wanted to know what this meant for my future. The doctors and nurses were so concerned with getting me well, information about future prenancies was not a priority.

I agree with Niki. They need to provide lots & lots of information, options & suggestions -- and sometimes more than once. Parents are in such a state of shock & there is no manual to help us through this situation. We rely on the medical staff to be our guides, to reassure us that it's OK to see the baby (or not), to take pictures (or not), etc.

They need to ensure there is a decent camera on hand, in case parents (like me, ahem) don't bring one. Or call in a photographer from Now I Lay Me Down to Sleep. Or have the "regular" baby photographer take some photos. Even if parents brought their own camera, they should take a few themselves.

I wish that one of the nurses had suggested unwrapping my daughter, or giving her a bath. It never even occurred to me that I could or should do that. They just handed me this tiny white bundle, & I just stared & stared at that little red face until I was so tired that I had to give her back & go to sleep.

And they need to be very clear on what the options are re: burial/cremation etc. -- if you opt for x, this is what will happen & when. I remember reading about a court case in which the parents didn't realize that letting the hospital "take care of things" for them means their twin girls would be buried in a mass unmarked grave. They sued (I never did hear how it turned out).

P.S. re: photos -- the setup is so important. They took three (Polaroids) of Katie with me & dh, but also three of her alone. She's wrapped up (face only visible) but lying on a metal tray. You can see the nurse's gloved hand holding the tray, and in the corner, there is a bag that's clearly marked "SOILED LINEN." About three weeks after my loss, there was a story in the local paper about how a stillborn baby's body was lost at a local hospital (not the one I'd been at, thankfully!) & later found with the laundry. I have since heard many other similar stories, & every time I look at those photos of my daughter now, I think, "There but for the grace of God...!"

My support group facilitator used to give seminars to hospital staff on supporting bereaved parents, including how to take photos. She said although she knew those photos were precious to me (& they are, since they're all I have), she wanted to use them in her seminars as a prime example of how NOT to take photos!!

I'm delurking to add to the conversation.

Our hospital actually did alot of things right.
- A social worker met with me, and I think she was even around for part of the delivery of my already-dead baby. She was an exceptionally compassionate person who knew when to be there and when to back off and leave us alone.
- After the birth/death, the social worker and doctor sat with me and my husband for quite a long time talking about what we could expect to go through, what support services were available, what we were entitled to for parental leave (a BIG help, because I just assumed I'd have to go back to work right away), etc.
- Some lovely women make and donate tiny clothes and blankets that you can dress premature still-born babies in. That was a huge blessing.
- Some of the nurses took my son and made a plaster foot mold for us to take home. They also made up a lovely birth/death certificate with a tiny print of his feet at the bottom. We have it framed along with the pictures of our other children on the living room wall.
- They took some polaroid pictures of Matthew, but also invited us to bring in someone with a better camera to take more.
- I was given a book that I think was called "Empty Arms" that helped me anticipate things like when the breast milk came in.
- If I remember correctly (and some things are a blurr) the social worker was also in the meeting when we received the autopsy report. That was helpful, because most doctors are a little short on compassion when reporting medical information.
- The hospital has a partnership with a local funeral home - every six months they have a special service for all of the babies lost in that time period. They cremate them and put them in a special memorial crypt. It's a nice space, with a headstone, some shrubs, etc. It's nice to sit there and feel connected to the other families whose babies are there.

Like others, I think one of the only things that I might have added to what was done was that I would have appreciated a little more follow up. You're left kind of high and dry to deal with everything on your own.

Oh and there's at least one nurse that I'd like to see demoted to kitchen clean-up crew. She was one of the most rude, inconsiderate and totally clueless individuals I've ever met. When I found out (in an ultrasound) that our son had died and had to phone my husband at work, she sat in my room and stared at me the whole time I was on the phone with my husband. A few weeks earlier, she threatened to throw my sister out of the hospital because she stood up for me during a particularly rough night.

One other comment - about pictures (I just read the comment above mine). Our hospital did a lovely set-up for the photos. They put him on a blanket, surrounded by some stuffed toys. I think for a few of them, they had a rose in the picture. They invited our friend (with a better camera) to take pictures there too.

Kate, everytime I read how you were treated makes me just shake with anger on your behalf. Having done some work in this area, direct her to the following websites and places.

http://www.phac-aspc.gc.ca/dca-dea/prenatal/fcmc1_e.html

This is a landmark book and official Canadian government policy on how maternity/nicu and bereavement care is supposed to run in this country. chapter 8 is all about loss and grief and describes exact procedures for how to care for bereaved moms losing a baby at every gestation.

If they need training, they can ask the Family Centred Care Institute in the US to come in and teach them. Nurses and Docs can get teaching credits for these courses, so they are more likely to attend.They have a training session coming up in Calgary soon.

http://www.familycenteredcare.org/

Also, one of the best in the country for treating bereaved moms right is Women's College, or Sunnybrook as it is currently known. Tell her to call them and ask for help in setting things up at your hospital. They don't just have a plaque in the hall, they actually live and breathe the concept of caring about patients when tragedy strikes. Some other hospitals just say that they do, but they really just pretend.

Another blogger who might be of help is here, http://sashabella.blogspot.com/

They are working towards making palliative care in NICUs and PICUs a priority for the sake of babies and moms. Wonderful guy.

If you need anything, please email me, I've taken courses in this, and I'm happy to help...and I mean that for anyone else who is reading this and thinks their hospital needs a refresher course AKA kick in the ass.

Ahh, and I almost forgot, when I speak to hospitals and nurses and social workers the refrain I hear most often is that they would like to change things in their hospital but the Doctors block them constantly. Workplace politics causes incredible problems when they try to bring in better treatment and palliative care.

Basically, if the researcher wants to see change, they need to get the docs onside, especially the older ones. They really are the number one obstacle.

Thanks so much to all of you for such thoughtful reponses - something tells me I'll be referring the researchers here so they can see for themselves.

Also, I feel a need to clarify - on the whole, I feel like we were treated very thoughtfully by the hospital. There were shortcomings, and of course the babies are focused on much, much more than the parents. And yes, we often felt lost, confused, frustrated, lacking in guidance. Whenever we did, the nurses always stepped up as our advocates and our friends. They were wonderful. The doctors were just... doctors, you know, busy and noncomittal, as I guess they have to be. The social workers were nice, but completely ineffectual, and mostly focused on the mechanics of organizing parent rooms night by night as opposed to communicating with us or supporting us in terms of life after loss.

But really, aside from a few unfortunate episodes, we were blessed to have many caring people in our midst.

I always kinda feel badly about talking about this subject, because our experience -- at both hospitals, delivery and Children's -- was really textbook. But I think what tipped the scale was that Maddy died at Children's, and Children's is very, very good at death. A switch flips, and suddenly the residents are asking you if they can call anyone (medical, that is, and yes -- the NICU doc at Delivery hospital and my OB), a social services worker came to speak with us about Bella (this was on a Sunday afternoon, btw), and the head of the lactation group was out (it was sunday), but our nurse happened to be on it, so she ran around and made phone calls, and tracked down keys, and gave me helpful handouts on stopping lacation, and a resident drew my blood for the milk-donor program so I wouldn't have to return to the hospital during the week. I left with a million handouts on reading for us and Bella, general handouts on grief, and I can't remember what-all because I didn't touch any of it for weeks, but I was kinda reassured that it was there.

The nice thing at Children's is that it doesn't stop there. Not only did Delivery NICU doc and my OB call me at home within 48 hours, but Children's "Bereavement services" called me about a month later to check on me. I had called them in the interim for counseling recommendations, and they asked how that was going, told me (surprise) they had Maddy's blanket she died in -- did I want it? And they now send me announcements of the services at Children's for bereaved parents, mostly the candlelight ceremony in December. They are very organized, bother to meet you in person (as my contact did at a service), do email, etc.

I feel very blessed in this regard that she died here, and not at a general NICU, or god forbid, in my local hospital or in my old state. I think I fell between the need for handholding/name-repeating, and being left the fuck alone (no way would I have picked up the phone had bereavement services called in the first few weeks -- they must know that), and felt good about the quality of care.

Really my only regret is that the nurses at Children's didn't tell us about "Now I lay me down to sleep." We have photos, and I'm grateful, but they're really not very good. I had no idea this organization existed, and would've liked them there as well.

Our problems were mainly with the doctor, too. The nurses were all over the place trying to do whatever they could, in fact when I went back up to the hospital the other day it was the nursing director of the maternity unit who found someone for me to talk to.

I think Niobe had a good point, too, that not every parent grieves the same way. They should *STILL* collect everything they can, so that they have it to offer, but if the parents don't want it don't force the issue.

The pain management people were just driving me nuts, because they were stealing time I needed. Then afterwards, the doctor kept wanting to drug me with other stuff, but of course he was a horrible man anyway. Did anyone else also get sick of the constant offering of antidepressants? That's an issue that goes across the medical field spectrum - treating normal grief reaction like a chemical imbalance.

I was treated very well by the hospital and its staff. When I was discharged, there was a community nurse who followed up with me, as would have been the case if I had brought home a LIVE baby. This nurse spoke to me briefly, listened to me grive my lost boy on the phone that day and then offered to call again the following week. I never heard from her again. I think it is shameful. Absolutely shameful. Follow up, by any professional involved, is paramount in my mind.

As for the hospital though, my only suggestion would be that I would have liked to have spoken to another parent who had experienced a similar loss before I birthed my son. I was given forms and pamphlets by the social worker that described what I would be going through, what to expect, what kind of things I might appreciate in the aftermath (holding my baby,taking photos, etc.) but I know I only half-took in what these papers said. I don't know the logistics of actually having someone come in and talk to parents who have or will likely lose their babies, or if there are loss-parents who are even willing to do this, but I think it would offer something the pamphlets and professionals lack. I know I would have appreciated something like this and I know I would want to become involved if something like this were offered in my city. I intimately understand the importance of it, I guess.

I don't have much NICU experience, despite 48 hours with my 3rd baby in the NICU. When my 2nd baby was stillborn, my hospital was wonderful, and I'm sorry the social workers at yours were useless. Follow-up, that's what I'd say. With a phone call, a letter, something. My OB phoned me the week after it happened to ask how we were doing, and if he could do anything - but he's the kind of guy who would do that o matter what. I was barely verbal at the time but that phone call meant the world to me.

I would suggest they link up with Now I Lay Me Down to Sleep, which provides photographers to take pictures of stillborns or seriously ill babies (website: http://www.nowilaymedowntosleep.com/). Also, Kate, you may want to contact Christy Jordan, at this blog: www.parents.com/followingelias. Her son Elias was a micro preemie who spent months in the NICU, and has some serious health issues now. She became a parent advocate in the NICU after her experience and I know she has many good insights into making the experience easier for parents.

Ginny

Oh Kate.... the things we imagine to do and never do... and the things that happen to us that we never imagined...

I'll come peer with you over the Bottomless Pit, if you will let me grab on to your hair... chicken me.

I think by now everyone has said everything that I can think of already... that time, that space, especially, is so important. We had a special "thing" hung on our door, I think a leaf, to indicate that a death had occured in our room. We were all through those two days attended by the same pair of nurses (who were great, and which was great, so we did not have to review our story a million times); I think the leaf is just in case another nurse needs to stop in and she won't be inappropriately chipper...
we happened to be at a really small hospital, but they did almost everything "right". And I am thankful for that. Hopefully, one day, all hospitals can have a protocol in place to make that awful time at the hospital a less painful one...

We terminated at 24 weeks after finding out our baby had a fatal heart defect. I like the leaf (or whatever) on the door that Janis mentioned. It would have prevented a very chipper nurse looking to borrow a stool from congratulating us as my husband held my dying daughter.

I would have also appreciated a social worker who wasn't condescending, asked me questions before offering advice and didn't tell me "if you aren't back at work in a week or two, there's something wrong". Um hello, there is something wrong, my baby is dead! She did call a week later to check on me, but to be honest she was the last person I wanted to talk to.

We had medical follow-up but it would have been nice to have emotional follow-up. Apart from that social worker no one really asked us how we were doing.

My name is Angie; I am a Now I Lay Me Down to Sleep photographer. I'm pleased that so many previous posters have heard of our organization.

Loribeth or others, I will be happy to retouch the pictures the nurses took of your babies. I can't make any promises, sight unseen, but I'll bet I can at least remove the "SOILED LINEN" sign, etc. A big part of the work at NILMDTS comes after the photos are taken, in post production. It would be my privilege and my honor to preserve the precious images you hold dear while taking out as much evidence of poor photographic technique as possible. It should go without saying, but just to be clear, there would be no charge whatsoever for retouching images nurses or others took.

My email address is gypsypeach@aol.com. All my other contact info is listed on the website I listed.

Angie, I'm knocked off my feet, truly. This is so kind of you. We've always been enormous admirers of your organization here at Glow in the Woods.... I'll be in touch with you directly to chat a bit about a few things.

Thank you so, so much for reaching out to this community with such thoughtfulness and love. It's wonderful of you.

I thought the Nicu nurses were great. I thought the doctors were absolute knobs. It was their unwillingness talk to us about what was happening that gets to me the most. We could tell that they knew much more than they were letting on... but they were too scared to tell us. I don't know why. They were scared that they were wrong and hence too proud? They were afraid of litigation? All they ever told us was that our life was going to be very hard and they would shake their heads and look at us with such pity. Pity. Not compassion.

I think they need to understand that no matter how sad and hard it is, if we ask the right questions then we should get the right answers. It might take us a while to accept it, but at least when we finaly do we know where we can go to get more information. I believe forearmed is forewarned.