In youth we often perceive experiences in the moment and are fully sure that we will never see them differently than we do right then. And yet, as I have lived and had deeper (and sometimes harder) experiences, I have come to see that how things are in one moment may not be how I will always see them.
When I meet a family who has received a life limiting diagnosis for their baby, I walk a tight-rope of respecting how they feel right at this minute with the sage wisdom that their perceptions of the whole experience will evolve greatly over time.
Below is a guest post from Julie who I came to know in the course of preparing for the birth of her child …her story became a story that we shared and I think there is much to learn in it…
In May 2008
My husband and I were presented with the words: “If it were my wife, I would terminate. It’s going to be a long and complicated pregnancy with nothing fruitful in the end.” These words were spoken by our Perinatologist the day we received the fatal diagnosis for our daughter Robin Elizabeth. These words have been forever etched in my mind.
Our sweet daughter, our third child, would not be capable of living outside of the womb. For the next four months, we would carry Robin fully understanding that she may only live for a few minutes after birth. Denial, heartache, anger, sadness, anxiety, and trepidation – just a few of the emotions that would consume us. Through all of this, my husband was a rock. I drew strength from him and the fact that he knew the trial we were experiencing was something we could weather. Together we were determined to honor our daughter. We took a trip to the ocean so she could hear the sound of waves, played music that would make her kick, tried our best to explain what was happening to our older children, all in the midst of deep grief.
Thankfully, our Obstetrician was terrific about supporting us and respecting our wishes. He referred us to our local hospital that offered a system of support often called “Perinatal Hospice.” Nurse Tammy assisted us in walking the precarious steps over the months that followed. It was difficult to imagine that I could ever feel better about this experience, although I vividly remember Tammy helping me realize something to which I would cling. Our other children would know how much we loved them by bearing witness to the love we were showing this baby. They would forever know that had they been the child with a fatal diagnosis, we would have loved and respected their lives as well.
In September 2008
Robin was born. After so many months of waiting, Robin greeted us with incredibly red lips, bright blue eyes, and the sweetest cleft in her chin. In that moment, all of our sadness melted. We were parents holding their newborn daughter. I often like to say that Robin was loved, hugged, and cradled for the entire 41 minutes that she was alive. Not very many people can say that they were cherished and surrounded by love for their entire lives.
Tammy had coordinated specific aspects of our care to allow our time with Robin to be spent the way we desired. She spoke of “sacred parenting” to “describe the time a couple has with a dying newborn.” Tammy helped to provide a place where we could be parents to Robin in the precious time we had, including minimal interruptions from hospital staff.
Four years pass…
In time, we move through life; our intense grief, a lot of healing, the growth and strength of a marriage, the anxiety of a subsequent pregnancy, the healthy birth of our fourth child, and a lot of love and support. I began to mentor other mothers in these situations and consulted back to Tammy as a Parent Advocate. She became a dear friend.
In September 2012.
Tammy had been networking and teaching about Perinatal Hospice and had come to know Akiko, a Nurse Researcher and Midwife from Japan who was working toward introducing the Perinatal Hospice care model to Japan. Akiko accepted the invitation to do a site visit at our local hospital and Tammy asked if I would be interested in joining them, sharing Robin’s story, and “tagging along for lunch.” I jumped at the opportunity!
On September 6, 2012
I was honored to meet with Akiko and her translator. I brought with me a beautiful scrapbook filled with pictures and stories of Robin’s birth. Both women were rapt with attention as they asked questions, took notes, and listened to a mother talk about her daughter. The beautiful photos and mementos from our time with Robin tell her story well.
It turns out that Akiko’s visit was quite the big deal and “lunch” was actually a reception where administration from our hospital and all areas of the Women’s Services Teams were represented. I didn’t expect to say a word until attention was focused on me and I was asked about my experience there. It turned into a Q & A where I was again able to share Robin’s beautiful story. I was able to directly explain to my hospital’s leadership how much the compassionate care we received helped in our family’s healing. What an incredible honor and what a spectacular tribute to the sweet life of our child.
On September 7, 2012
The following day I was forwarded an email that completely rocked me. Tammy received an email from Akiko thanking her for the time and effort it took to organize such a great meeting. The first line of this email sent me reeling: “Dear Tammy, Thank you very much for making my visit so fruitful.” I immediately had tears in my eyes. We had stepped out in faith that God had SOME purpose in our child’s life and our suffering. We had been told by our Perinatologist that our daughter would never be “fruitful,” but here was someone from across the globe who was recognizing the value in her life. This was not at all what I had expected for God’s plan. I never imagined that Robin’s story would reach beyond our family and friends; but now it was reaching around the world.
On September 8, 2012
The story is already so powerful yet God was not done. The very next day, I received a call from a mutual friend telling me that Tammy’s husband had died very suddenly in their home. I got food and went directly to her house where I was the first friend to arrive. The woman who was there for me when I needed her was now consumed by grief and sadness and in need herself. She met me at the door and I tended to her as she had tended to my tears, confusion, and sadness. In Tammy’s words, “In God’s economy we often take turns in service and strength.”
It is March 2013.
Four and a half years have passed since Robin was born. I can’t imagine how many times I must have told the incredible story of our daughter’s life. Because of her, we witnessed the blessings of overwhelming love and support from dear family and friends. Because of her, I have helped to mentor other mothers who are carrying to term. Because of her, hospital staff in Japan will receive practical ideas that will help care for families wanting to honor their children and aid in their road to healing. Because of her, I befriended a remarkable woman named Tammy Ruiz, and in her time of need, I was able to try to return the compassionate care that had been bestowed upon my family and me.
If you look up the definition of “fruitful” in the dictionary, you find: “Producing good or helpful results; productive.”
I dare to say that our little 41-minute old has produced some pretty incredible results and helped an awful lot of people. Sounds pretty fruitful to me.
My husband’s death was unexpected, shocking and sad. He didn’t feel well on Friday evening and was gone by Saturday morning. I was as shocked as you might guess yet I found myself coping.
I am certain that my faith was central in my survival and coping…I really believed with every fiber of my being that he was in Heaven and he was happier now than he had ever been before. I was soothed that I knew I was a great wife and in our Faith Tradition (Catholicism) the primary goal of Marriage is to get one’s spouse to Heaven – and to the best of my understanding (with a stop over in Purgatory) I had succeeded.
I hated so many of the tasks I had to do (one of which I haven’t completed). I was paralyzed by with angst over what to do with his soap, shampoo, toothbrush, military uniforms, and pile of dirty laundry. I found a proper disposition for all of these items except the laundry (it’s still in my closet). I hated ordering checks without his name. I hated having his name removed from our cars. I hated closing his business and having his cell phone deactivated. With a wild passion I hated deleting his name from my phone (I got up the morning of his funeral and got a momentary burst of courage and did it). I hated catching myself speaking of him in the present tense or saying “we” when there really was no “we” at all…but mostly I hate seeing old couples together – the thing I thought I would have and don’t….and yet I persevered even in these hated tasks.
I did better with other things…like making decisions. I had to make about 200 quick decisions and I think I did a fine job. I redecorated his office and took it for mine which I argue was a good idea. I reconfigured some financial things which seem to have worked out fine (except when I told the shrew at the bank that buying Dave’s casket was more pleasant than dealing with her). I contracted some work on the house and had some items fixed and it all went well.
I still cry many days but I trudge through and do pretty well mostly. I am recently reminded, however, of something I said soon after he died.
“I am OK, I think, but I hope I don’t get to the 6 month point and crash”.
3 days before the 6 month mark, I did this:
Just for the record, when I said “crash” I meant it as a metaphor.
(Do you hear that Universe? METAPHOR!)
He bought me this car and I think he was really proud of seeing me in it. A guy at the Mercedes dealership said “It takes a special driver to get the most from that car” and he responded “My wife is not that person” haha !
Everyone involved in the crash walked away and I have a newfound fondness for airbags and the capacity for my car to protect soft human flesh while allowing steel to crumple up. I am terribly unsettled that a split second of distraction (NOT caused by a phone, I was neither talking nor texting) could have such awful consequences and I am reminded of the random nature of life and death. Im reading a book about St Ignatius of Loyola and he said that we shouldn’t be afraid of bad things happening…they WILL happen, but we don’t need to be afraid.
I was married for the past 26 Valentine’s Days and in love for the 3 before that so it was with trepidation that I went into this past Thursday as a new widow – not sure of what I would coast through and what would hurt me. I bought gifts for my family members and received a few dear things from kind people was proud of how well I was getting through the day until I took my smart phone to the cafeteria at lunch to check my Facebook.
As I scrolled through my newsfeed I came upon an image I never expected and was most certainly NOT prepared for. Someone had posted a photo of my husband’s rose covered grave which made it onto my newsfeed….his rough, rocky fresh grave …so rocky that looking at it the day of the burial so so visually disturbing that I was compelled to fix it as best I could. With no topsoil or sod available to me in my in my rental car and black dress, the best I could do was to cover the grave with dozens of roses my friend and I got from the nearby grocery store.
To say that I was angry that she would post this photo with no warning or permission (on VALENTINES DAY?!) was an understatement, I felt violated and I was incensed. Those roses were not placed there for the world to see, they were a sacred gift from a wife to a husband to help a broken heart and cover an ugly fresh spot of dirt which that day had consumed my beloved never to be retrieved again.
I share this story with you because grief is so intense that it can be hard to even remember how intense it can be once you recover from your most recent bout of it. It was with a grievers heart that I read stories in the news this week about a young woman who died having a late term abortion.
As a Catholic who values life with everything I am, I am against any extermination of life. There was, however, simply nothing gained or learned about the issue in any way by the obscene invasion of privacy that this young woman and her family suffered at the hand of the “ProLife” media.
The fact that a “safe, legal” late term abortion can be dangerous is not news to anyone, nor is the fact that people cross state lines to do them. The reasons people have for these procedures are ones we could predict without even trying. The fact that the Physician performing these procedures has little respect for life is not a surprise.
What we did learn in the course of prying into the life of this family is how incredibly mean and self serving to our agenda we can be. The release of her name, image and story were touted as some exciting scoop. Quick and instant information as well as access to photos of her found on the internet splattered her face, story, hometown, name of her employer, school history…everything on the internet – even photos of her funeral. I read nothing of her family being asked permission or granting consent for the story and photos that were used.
As if the photos of her wedding and funeral were not enough, someone found her online baby registry and even though the family took it down from the original site, some “clever” person had thought ahead to make a screen shot of it & posted it. What kind of a sick, vengeful person does this?
When I reflect on how painful it was for me to see even one thing about my late husband posted on the internet without my knowledge or permission, I truly cannot fathom what this family has been through. The very type of person we claim to defend is the person we used and violated.
She is being called a “victim” of the abortionist. If this is true why are we prying into her life and splattering her story all over…wouldn’t a “victim” deserve their privacy?
As a Nurse, I am acutely aware of confidentiality laws in healthcare. Those laws were made for specific reasons (with very stiff penalties) but if you think about them, they really are simply based in respectful decency. I don’t know where those who “broke the story” with her identity got the information and I have no idea why they seemed so proud of themselves.
This woman’s story didn’t belong to anyone but herself and her family and we will never know if or how they might have shared because we stole it…we took what wasn’t ours to take and we used to because we thought it proved our point.
Or should I say THIER point because I no longer want to be associated with people who act like this. If you ask me if I believe that abortion solves issues of unplanned pregnancy and fetal illness, no I don’t think it does, but if you ask me if I am “ProLife” and align myself with people who are this mean to the grieving, then your answer is “no, I’m NOT ”.
When I was a Chaplaincy Student, I struggled to find my niche because I was not ordained clergy like many of my classmates and neither was I a nun like so many of my fellow Catholics asked for. What I brought to situations would eventually reveal itself.
I was doing an 18 hour overnight shift as part of my “on call” time required by the program. I loved and hated these days, the work could be so profoundly meaningful and exhausting so sometimes I hoped for nothing but sleep.
On this night I was paged by the ICU. “We just told a lady that her teen son was brain dead. We had hoped to be able to save him but he has passed that point and there is nothing more to do, so we called you”. I reflected how scary, odd and honoring it it is to be the one called when all other options are gone. I promised myself that I would not say anything trite to this woman…unlike my normal talky self, I internally swore I would stand silent before I gave her platitudes. God promises us words, doesn’t he? I was sure there was a Bible passage that promised me words when I needed them although I had no idea what it was.
I arrived in a room to find a few adults at the bedside of a young adult who simultaneously had the appearance of a very injured person with many signs that he had been healthy and robust a very short time before. The dressing over his injured head covered him to the edge of his hairline and the stuff keeping his breathing tube in covered his lower face leaving only his cheeks visible.
I spoke just enough words to figure out who was who in the room and introduce myself. As soon as I identified his mother, I quit speaking. My insides, however started SCREAMING “God!! Tell me WHAT TO DO!! Tell me what to say !!!! and NOW would be good!!! ” yet I carefully kept my outside demeanor calm. (More silent internal screams GOD TELL ME WHAT TO DO!!!!) No words came, but my maternal self looked at him and I noticed the soft apples of his cheeks and I like to kiss those soft spots on my own children. Her chances to mother this young man were very short. I walked over to the bed, put the side rail down, pointed to his cheek and said “Tell him you love him and kiss him right there”. As it turned out, the Nurses who had previously told them to not stimulate him (lest they increase the pressure in his brain) while a recovery was hoped-for forgot to retract that directive once it was clear that no recovery was possible (easy mistake to make, I could have made it myself).
The Aunt in the room said something that stunned me “Well, you knew JUST WHAT TO DO” echoing exactly the thoughts I had been sharing with God.
What I brought to that room was not an Ordination or title, it was my obedience of service & vocation as parent. As my interaction with them evolved that night (which included talk and prayer) I believe I helped her be the mom she needed to be at that moment. I was forever amazed at the Grace that God showed in getting the Chaplain with the right gifts to the right place at the right time.
To be clear – had they been Catholic (they were not) they would have also needed the Sacraments that only a Priest could bring & benefitted from the kindness of the Religious Sisters and as a lay person I would never presume to step into those spots. In that moment though, God sent a mother who loved Him to serve a mother who needed Him and His work was done and His love was conveyed.
When I was a very new nurse, I worked in a large University Medical Center in a Peds ICU. One night we had a baby who was doing poorly and we called a Chaplain because the parents had asked that the baby be baptized. I assumed that the Chaplain would be an old man…when a young woman arrived, I think I stared at her from the moment she entered to the moment she left. I wanted to be her for about 4 reasons that night. I was 20 years old, however…WAY too young to think of such a change and besides, God and I hadn’t been on speaking terms for a while.
Years went by and circumstances changed and I always had that idea way in the back of my head…if you had asked me what I would do if I could do anything, I would have said that I wanted to be a Hospital Chaplain. (Yes, God and I were speaking again, but with a new language as I had become Catholic.)
My 3 kids got into school (barely, Julia had just started 1st grade) and the idea was in my mind again. I found a local Chaplaincy Program (CPE, Clinical Pastoral Education) in my greater metro area (Kansas City at the time) and applied. It was an act of frustration and defiance at the time although I am not sure who or what I was defying.
The application said that you were supposed to be an ordained minister or “other qualified laity” ; I decided that I was the latter…now I just had a panel of experts to convince. I had to write a few essay answers to questions and then the interview. The interview was me on the hot seat with about 9 smart, capable, well educated Professional Chaplains. I don’t remember many of the specific questions they asked except that the “how would you care for someone outside your own tradition” in about 6 different ways. At the time of the interview, I felt scrutinized to the point of abuse, but once I learned how much damage a bad Chaplain could do, I became forgiving of how invasive the questioning was.
The first question people ask is can Catholic women be Chaplains? Yes. Lay woman function much as Religious Sisters would in the same setting. I perceived myself as studying the art of visiting the sick. One surprising revelation came one day when my teacher referred to me “going into ministry”. I assured him that has most certainly NOT gone into ministry. The argument went on for a bit and definitions were argued and after quite a battle, they convinced me that I had gone into ministry. (I was seized with fear that I would never be able to tell a dirty joke ever again.)
My peers in class were a Catholic Priest & an assortment of protestants were mostly Methodists & folks from Unity & Unitarian (not the same thing) groups. I percieved that they felt bad for me that I couldn’t be ordained which felt strange because I am (really no joke) 100% ok with women not being ordained as Priests (or Deacons). I came to learn that Hospital Chaplaincy training is part of the required course work for almost any Christian denomination and many of my classmates were there for this reason. I was also the only Nurse in a class of people who were venturing into a hospital setting which was for them rather foreign; it was really strange for me to hear people speak of how frightening and stressful it was for them to negotiate something that was second nature for me.
Discussing / arguing points of faith and theology with Pastors, Priests, Seminarians, Rabbis & Religious Sisters, THAT was foreign territory for me. At the beginning, I was so convinced that every person in the room was smarter than me, I thought I might never want to speak. If you know me, you would know that “not speaking” didn’t last long. The class was sworn to forever secrecy of things spoken of in that room so I can share very little of what was spoken in class (plus Im getting old and have forgotten most of what transpired, I only remember ideas and feelings) so I won’t give any blow-by-blows, but there were a few lessons that have lasted with me in the nearly 10 years since I took the class.
I will cut to the end of the story and tell you that after studying for the better part of 2 years (part time) I decided that I didn’t want to be a Chaplain and would take my hard-earned new knowledge back into my old world of Nursing where I hoped it would serve me well (it has). I now feel capable to have “God talk” with people from a wide range of beliefs while being true to myself and being respectful of what they believe. My goal isn’t to make them believe this or that, it is to assist them in times of crisis to remember how to mobilize their own faith to help them.
Now that I have opened this box of memories, I want to tell this story and that one – all making this far too long for a blog post…I will tell them in due time.
(I edited this about 2 hours after its original posting when I realized I could have been clearer)
Oh admit it…there are moments when you are certain that your pain is the WORST. I think it is OK to admit that to yourself because pain is such a subjective thing. I live in a world where people often seem to try to quantify suffering…sometimes it is good to do that (like telling your nurse how bad your physical pain is on a scale of one to ten so that s/he can get you medication) or it can be VERY bad (sad that her baby is dead, but her pain won’t be so bad, she has other kids at home).
In my wise moments, I like to share with people “the worst pain is the one you have” acknowledging the pain of others but in my weakest moments, I still indulge in believing that my life’s pain is worse than anyone else’s (I think that makes me human).
I have a huge respect for honoring the intensity of ones own pain as long as you can find it in yourself to also (perhaps eventually) honor the pain of others.
The flip-side of honoring your own pain is using the ”it isn’t so bad because someone always has it worse than me” method and I’m not a fan of it. This coping skill subliminally tells us that we don’t even have a right to process our pain simply because we think that someone else has “more” and if we don’t process pain & loss, do we ever really heal from it? Also, if we use that method of coping and urge others to do the same, are we not discounting others’ pain and telling them that they don’t have a right to grieve? If we deny people the right to grieve smaller losses based on someone else having a worse one, how do we expect them to ever develop the skills to deal with it when they are the one with the HUGE loss?
(I will admit a specific moment of wanting to leap out of my own skin with irritation hearing someone explain to me that I don’t really need to dwell on the pain of losing my partner of 29 years because “someone always has it worse”. )
My mother is the least nurturing and least understanding person I know…my sister in law and I have a saying “If you feel bad about something, call her she will make you feel significantly worse”. No matter what pain I have ever felt, she discounted it immediately “Oh that is nothing, I read in the paper today that someone____”. (Funny, when she is upset about something, she never mentions people in the paper who have it “worse”). In time I realized that going to her for support was like going to Home Depot to buy bread – no matter how much you wanted or needed bread, you were simply NOT going to find it there (so quit looking). I remember once saying to her “does a man grieving the loss of his leg not have the right to grieve because another fellow lost both legs?” Using her logic, moms who suffer the deaths of one twin or those who go on to have more babies or widows who remarry have no right to grieve and I reject that idea.
I can’t tell you how many times I have been contacted by a woman who had an early pregnancy loss who is suffering terribly because everyone in her life is very much expecting her to overcome her loss very quickly and she simply cant recover as fast as those around her are wanting her to. The juxtaposition of her need to grieve with the demands of those around her create a storm where her grief recovery is halted and then demands escalate as does her grief. By the time she calls, me, she is beside herself with angst and exhausted of trying to hide her feelings from those who are telling her to not have them. Giving her a safe space to grieve and time to work it out and respect that it is real are some of the best ways to help her.
Another aspect of this is that we can be easily mistaken about what people value most – the loss of which would cause them grief. I once had 2 awful things happen to me at the same time; one was something that people assumed was terrible and painful and they gave me a lot of support; I however, really didn’t care all that much about it and it didn’t cause me nearly the pain people thought it would. The other (almost simultaneous) event that people seemed to take much more casually was, to me, a HUGE, painful, agonizing, misery-provoking, life changing disaster. I found it really hard to interact with people who simply did not understand how upset I was or why. Similarly, when I was in Chaplaincy school, I saw many times that people in the midst of hardship were often much more bothered by something else that took time to have them explain to me.
I will admit to you that in the 52 days since my husband died (and yes, I DO expect to lose count soon…but for now, it is too easy to know how many weekends have passed since he did) I have, on occasion pulled out the “new widow card” nearly demanding that people take me and my pain seriously. I attribute this to the near-insanity of new fresh grief which is something I virtually expect to see from the newly bereaved. (I will admit that as a person who cares for the bereaved, it is exhausting to endlessly deal with people doing that even though its so common and expected.) There is a social time limit on this behavior and even though I can’t tell you exactly how long that is, I think I already reached it. I’m glad that my daughter hasn’t yet returned to her waitressing job lest she dissolve into a puddle in a situation where her “dad just died” card will not be honored.
As we transition from fresh new crazy grief to “you better get used to it cause its not going anywhere” chronic grief, the bereaved and the non bereaved in their midst have to try to find a healthy balance of mutual kindness, healing and support.
This post will be a mess as I am early into my new widowhood and lost in a maze of paperwork and sadness.
I have long disliked “how are you?” as a greeting because people in very bad circumstances are forced by societal convention to cough up a “I am fine, how are you?” even if their insides are in despair and near brokenness…and nothing can suck your spirit like being forced to say that you are “fine”. Trying to go against the cultural grain and actually answer that question honestly with a “Suicidal teen in mental hospital, thanks” or ”Baby on a vent and not expected to survive, how are you?” are seen as inappropriately hostile.
When I was 26, I was pregnant and had a toddler I was raising alone as my husband was in a war and my family was very faraway. I went to work a 12 hour night shift on a day when “The Ground War” broke out (after weeks of bombs from the air in the first Gulf War which turned out to look like a mother’s kisses compared to the war after 9/11, but noone yet saw that coming) and I knew my husband was in peril. A Doctor at work greeted me with a “how are you?” and my answer was “somewhat marginal” stopped him in his tracks, I can still se the look on his face… a look like he had just learned something.
So I went into Walmart last evening and the cashier greets me with a version of “how are you?” and I consider “Dead husband, and you?” as an answer but instead chose “fine” ….like my newly bereaved parents, I don’t even have the fight in me to rail against it.
A few months ago, I read the local newspaper and it had various articles “Local woman raped, taken to hospital”, “Tragic car accident, taken to hospital”, “Random stabbing, victim to hospital” and it struck me that all their relatives would be entering through the front door of a hospital where the greeters have been instructed to say “How are you?”. I wrote a suggestion to the hospital that people be greeted with a “Hello, welcome” instead of “How are you?” but it was ignored as the greeters still “how are you?” everyone (last time I observed anyhow).
I met with a set of newly bereaved parents near the hospital front entrance and we watched this trainwreck of communication happen in front of us about 30 times and the dad told me how much he hated it and yet even when I explained all this to a person with the influence to change the practice, upon leaving her office to do a task together, I watched her mindlessly say “How are you?” to no less than 834 people (OK, not 834, it just FELT LIKE 834 and I wonder how many of them were in some degree of despair).
Could we, as Bereavement Professionals and Bereaved people change our culture? Could we teach others how much better it is for a hurting person to hear “Hello” or “nice to see you” or “greetings” or “welcome!” or “Shalom” over the stupid, empty and mindless “how are you” ?
On the feast of the Nativity of Our Lady, my dear husband David died suddenly in our home this morning. I am being buoyed by my family, friends and the lovely people I supported in the past. Please pray for the repose of his soul and the healing of our family. Hail Mary Full of Grace, the Lord is with thee, blessed art thou among women and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen
Some of my Volunteers on their way to the “Walk to Rememeber” with a van full of supplies
The first time I ever saw the words “Perinatal” & “Hospice” next to one another, it was very shortly after the term was invented and almost no programs existed. In the intervening years that the idea fermented in my head, a few programs started, but it was still such a novel idea that no one who I spoke to in my world had ever heard of it.
I’m thankful that now the idea is catching on; people are interested and well informed. The programs that have started are all so different – the specific focus of each program is often driven by the specialty of the champions who started each program…there are very Medically focused programs started by Physicians (Kristen Anderson Perinatal Hospice in Northern VA, & a great program run by a Neonatologist in Toronto), many Nurse run programs like mine, a Chaplain run program in Pennsylvania, and numerous Volunteer programs spread across the country (Sound Journeys and Prenatal Partners for Life as examples) .
No matter where we started, most of us likely realized that it would take the proverbial “Village” to care for each family well – the MD programs reaching towards Nursing and Volunteers, the Volunteers encouraging Medical Staffs to create better hospital processes, & Nursing programs going in both directions.
I may have started out alone, but I’m not anymore. In the course of coordinating a Palliative Care delivery, I will interact with Perinatology, Obstetrics, Neonatology, Labor & Delivery, Mother/Baby, Case Management, Pastoral Care, Histology, Registration, Photographers, Security & others.
On the topic of volunteers, I am very blessed to have a wonderful cluster of women I cared for in the past who have made themselves available in case the parents preparing for a birth want mentors/companions for the journey. Volunteers have donated expert photography talent, founded and run a huge “Walk to Remember”, spent hours talking to moms/couples, helped make mementos, provided dinners, collected & packed up seashells, sponsored classes, made food for Nursing learning retreats, hand made special clothes & blankets & donated baby supplies. They are a very active and effective group.
In a “perfect world”, every city would have a hospital with a program that functioned like a well oiled machine (not one where the wheel had to be reinvented with each case) with buy-in from the leading Physicians down with seamless follow-through to a devoted group of volunteers. Most places aren’t there yet, but the good examples are setting the pace and progress is being made.
I doubt that anyone would disagree with much I have said up to now, here is where I get a bit more controversial… In places where hospitals have failed to create programs to meet the needs of their local service area, some volunteer groups have stepped into the vacuum left by these avoidant hospitals in ways that are not a good trend.
I have read the training manuals of one group who instructs their volunteers to write birth plans, attend deliveries, arrange specialist consultations and get actively involved with end of life care in NICUs. Health Care professionals have “Scope of Practice” norms that are reinforced by state practice laws and guidelines. Those wanting to support families through these difficult but profoundly meaningful times can’t simply ignore these practice guidelines because they have good intentions.
Community activists who feel passionate about this care can build bridges with hospitals and their staffs while clearly stating the expectation that a good system of care be developed within the hospital framework where these tasks are done.
Specifically on the topic of birth plans…after 26 years as an RN 16 in Neonatal ICU (most of which being on the Resus teams that went to deliveries…hundreds of high risk deliveries), 8 years in my job and dozens of Palliative Care deliveries, our head OB physician told me I have no business doing “birth plans” and she had a darn good point. BIRTH plans for these deliveries need to be done with the Midwife or OB Physician. Period.
In addition, though, I work with parents to create a “Parenting Plan” which give them a way to communicate their wishes for the whole pre/intra/post birth with regard to the care of the baby. I’m honest with them that I have the secondary goal of sparking conversation between them about a lot of the options they will have for care, so even if they never get a plan written onto paper, they will have exposed themselves to some of the ideas that they will need to make decisions about later and discuss them.
I use a 3 page fill-in-the-blank preprinted plan as a starting point, but they are free to write a narrative plan instead and/or write a cover letter. Narrative plans may give you a feeling of control being able to write everything out in your own words…that is a really nice idea, BUT if your delivery happens on a day when the proverbial “feces is flying at the fan” you are much more likely to have your plan followed if people can skim the plan to find the exact content they are looking for, so either do a fill-in plan and attach it or split your paragraphs with bold subject headers.
I have myself watched mentor/volunteer moms say to a new person “when you make your plan, be sure to include____, it made a big difference to us” and that kind of stuff is wonderful and helpful (they may even give a list of a number of things to take into consideration and that is great too) but there are simply too many factors and variables at work during a delivery / immediate post delivery palliative care case for a person who has only a handful of these experiences to be able to properly guide this process.
In most cases, details I learn about their wishes at delivery during the creation of the “Parenting Plan” inform me of things I need to start working on weeks before the delivery – things that would have NEVER succeeded if I had not been part of that conversation.
What I am saying is…if a hospital is not offering an experienced person to create a plan with the family, the next step is to INSIST that they provide an experienced person, NOT getting nice, well meaning volunteers to do it. (And I DONT say this because of a lack of love or appreciation for volunteers) If the Hospital claims that they don’t know how, refer them to perinatalhospice.org where there is a plethora of resources for caregivers.
Wonderful partnerships can be developed and people can work together to support families, but the division of tasks must be appropriate.