Nursing Conference
Speaking at the parent panel for the nursing conference went well. From looking at all the materials, it looks like a really valuable resource for nurses, so I hope that it eventually grows and expands into a larger venue.
The conference was called Synergy: High Risk Obstetric & Neonatal Nursing Conference 2005, and it is being held at the Miyako Hotel in Japantown (very nice place; we stayed there for our anniversary four years ago). Today was the “Peri-Natal Palliative Care Pre-Conference” stuff. I wish this could have been part of the main conference b/c more people would have attended, but I have a feeling that things have come a long way just to 1) have cross-over with the OB nurses and the neonatal nurses together and 2) to have the perinatal palliative care stuff included at all.
The family panel consisted of hubby & me, another married couple, and a mom. The other couple had a daughter who was full-term and totally healthy, the kind of baby that even the nurses comment on “Wow, she’s so happy and healthy”. Out of the blue, their daughter died of SIDS while still in the hospital. The other mom had three miscarriages in just a couple of years, at 12 weeks, 17 weeks, and 18 weeks, and now has a healthy two-year-old son (after a cerclage and bed rest for the whole nine months of her pregnancy!!!).
We each gave a synopsis of our story, then talked about the good and bad things that we experienced in the hospital and gave suggestions. After that, there was time for the nurses to ask questions. You could tell people were really moved; I saw tears in the eyes of some of the nurses as we were talking. The questions they asked were ones that showed a lot of thought, and it really would have been easy to fill up twice the time they had alloted for us (3:15 - 4:30). It was pretty emotionally draining to speak and to hear the other families’ stories, but we were glad to be able to give back and help the nurses learn how to care for others in our shoes.
One of the nurses said that she had been to lots of conferences over the years with high-falutin doctors with lots of degrees and panels of ”experts”, and that the five of us were the best experts she had ever heard. You could tell she was fighting back tears when she said it, and it meant a lot to me (can’t speak for anyone else) to hear that.
Afterwards, we could have stayed and listened to the last session of the day, “Bringing Humanness to the Suffering and Spiritual Distress of Parents”, but we were pretty wrung out. Instead of listening to that, we chatted with a couple of nurses then rewarded ourselves with a sushi dinner, as long as we were in Japantown. Amazingly enough, we somehow managed to get out of there for only $48. Usually, when we go out for sushi, it ends up being $70 or $80 for just the two of us! I guess we were having some self-restraint.
W: I thought of you when the subject of mementoes & photos, etc. was raised. My answer was basically that this is an area where there isn’t a single “always do this” answer b/c people are so different. I told them how much the photos & memorial box meant to me, but how bothered you had been when you received your son’s photo.
C (if you’re out there somewhere): We thought of you, and I got on my soapbox about nurses & social workers needing to help couples who are losing a baby to protect their marriages. I gave the illustration of what happened at your delivery and what someone should have done to help you guys. I also shared the inexcusable thing that happened with your dear Hannah’s remains.
S: Thank you for your information about the “Thumbies”. We shared it with the group, and I emailed the link to the nurse who had been our contact on the conference committee so that they could add it to their list of resources for parents.
E: We even mentioned you and your experience of losing your son when we were talking about options and the importance of letting parents know all their options. When you lost him, times were different, and you probably weren’t really given many (if any) choices. We’re so thankful that now parents can make their own choices about time spent with their children up to and after death.
To all our other friends at SAND and elsewhere who, sadly, are also in the same “exclusive club” of bereaved parents that we are in — tonight, we remember you, and we salute you! Especially if you had a bad hospital experience, our time at the conference today was partly for you, to help others not have to go through what you did. Thank you for sharing your stories and your hearts with us.
