A story was published back in February on the front page of the LA Times under Dan Costello's byline outlining some of the problems underlying Kaiser Permanente's multi-billion dollar white elephant, Health Connect.
In that story I was quoted as saying that in my fairly extensive career as an IT project manager that I had never seen a project so poorly or ineffectually managed as this one—since I am the person who, literally, wrote the Disaster Recovery Plan for Enron, perhaps this is really saying something. What Dan failed to mention in his story is that the motivation for me to come forward with my concerns stemmed largely from the manner in which my daughter's stillbirth was handled and the completely ridiculous manner in which my daughter's mother had been treated both during and after her pregnancy.
My position as someone tasked with helping design business processes and providing some level of testing oversight for the project could not protect us from the bottom-line approach taken by Kaiser and the economics of death (as I learned AFTER the fact) make for a strange and, in our case, tragic bed fellow.
There is a 30% chance that induction of labor will lead to an emergency c-section and thus (the REAL problem) potentially lead to a greater expense. Fixed cost projects of any kind do not like the sound of a 30% chance of revenue loss.
But, if a woman goes beyond her due date there is an approximate 1 in 300 chance that the child may die. Also keep in mind that Beth (Lehna's mother), no matter how healthy and fit she may be, was a 40 year old woman and potentially a high-risk pregnancy due to her age. These are not particularly good odds for a parent and no parent, if presented with this scenario, would accept these odds but Beth and I are not doctors, we assumed all was well—after all this was a company that paid me a fairly handsome sum to work for them on what I knew to be one of the largest, most expensive software initiatives in history so (from my perspective) this was a cash rich organization and certainly one that would watch over our special needs—and so we were not informed of the risks associated with having the pregnancy continue so far past the due date.
I know for many of you the idea of what Beth (especially Beth) and I went through—and continue to go through each day—must be unimaginable. But, please bear with me as I attempt to share our story in a way in which, perhaps, you may get a better sense of what really happened.
So: First thing–I want you to imagine a scene. I want you to imagine a baby's fat little naked body. I want you to imagine the baby's chubby little cherub body lying on your chest like you saw in that video in the birthing class you and her mother took the month before she died in Mommy's belly.
I want you to imagine the baby now being coaxed out of her grieving morphined mother. I want you to see it, really see it. You can hear the nurses whispering, their small pleasantries and kindnesses too little too late but you are appreciative just the same. Look at the clock. You are constantly watching the clock. Pulling time forward, desperately trying to push it a few days back. You know what's coming. You brace yourself but you have no idea, really, what to expect.
To add to the torment the mother has to be induced. She is not ready, naturally, to deliver her child but the baby is already dead and she has to come out somehow. A caesarean is out—too risky. It is not worth the risk to the mother (and later, when you begin putting two and two together, the EXPENSE for the hospital). The drugs are administered (poorly) the prayers for deliverance and strength offered, the nightmare has just begun. It is 3:00 am Sunday morning.
You hold the mother's hand; you try, somehow, to make the night as peaceful and comfortable for her as you can. The mother is beautiful truly physically beautiful and she is going through something no one should EVER have to experience and you do your part to make the pain she feels now as bearable as you can and you brace yourself for the next wave of pain you know is coming.
When she starts to come out, PUSH PUSH PUSH, her little head peaking out PUSH PUSH PUSH of her mother's vagina, you die. On the spot. Your heart doesn't just break. It stops beating. It no longer beats, it simply allows blood to somehow flow from place to place to place.
The baby, as you know, is already dead, and when she is pulled free her little lifeless body covered in her protective sack, her little dark hairs plastered tight against her cold little head, your mind breaks off a bit and ropes off a little space over in the corner under the boogie man and next to the spiders and bats and creepy old Mrs. Caverly, your ninth grade English teacher, the one who called you a parasite because you didn't read "Great Expectations". The birth of this child and all the terrible pictures and sounds and smells of the night (and, of course, the following day) is something that you can never forget. It is also something that you would never WANT to forget. This day is your only day and it will have to last a long long while.
Her death and the day you spent together is a line in the sand that marks in many quite recognizable ways the end of your own life. The baby's death now becomes your death. Remember what I have said.
The baby's death is your death. You are no longer the same; you can never EVER even pretend to be the same. You might just as well be dead yourself.
Perhaps, maybe, you are.
Remember, too, what it was like the night before after you drove to the hospital and when you found out in the labor and delivery triage room that somehow your baby had died, a baby who had gone full-term through a perfect pregnancy, a baby you had expected two days earlier, when you first came to this same triage room, to hold in your arms and dance and kiss and smooch for a lifetime.
Neither Beth nor I nor our beautiful daughters Elise and Riana will ever be the same again. No settlement no apology no ANYTHING will ever make it right. After Lehna's death I stayed at Kaiser because I believed that my skills as a business analyst would help minimize the chances of this happening to other parents but the project is beyond, I believe, ever really being fixed.
Beth and I had many quite serious disagreements about my continuing role at Kaiser after Lehna's death but I believed, then, that this was the correct approach, no matter how damaging psychologically this may have been to both Beth and me. Also, it allowed me to watch, like a hawk, exactly what was happening within the project over the past year from a fairly unique vantage point.
But when Lehna's fetal heart monitor strip just magically "showed up" one day–WITHOUT a date/time stamp–THEN I changed. It was then, literally THAT DAY, on the spot, as if a bolt of lightning had been attached rather crudely to my behind, that I became ABSOLUTELY determined to (a) leave Kaiser and (b) tell "MY story".
In retrospect I am not so sure I was correct in taking this approach but I was trying, to the best of my ability under the circumstances, to salvage what had been a fairly successful career and I did not want to lose both my child AND the career I had worked so hard for so long to craft and nurture but, ultimately, Lehna's death has most likely ended my career as well. Certainly her death has tarnished the rest of my life in ways that can never be undone.
Lehna Jordann Brewer was finally delivered into the world in Walnut Creek, CA at 3:44 am on Sunday, March 5, 2006 but, officially, this child never existed even though almost every time I touched her Mommy's belly she reached out her little hands to pat me; how can anyone ever REALLY get over this?
Lehna Jordann Brewer, according to the laws of California, was never born, she never died she is, legally, nothing but she is something to us and perhaps one day her life and death may serve a higher purpose. She was and is a BEAUTIFUL BABY: our little muffinizer rascalian girl.
The idea that a stillborn child is a non-event seems logically antithetical to the concept that a "child" can be murdered in the womb. This interpretation has, to me anyway, always been problematic.
Lehna was absolutely our child. We all miss her and her death really ruined our lives in so many ways. I changed her diaper and she spit up on my shirt. How she had a poopy diaper and COULD spit up on my shirt I don't know but I have the diaper and shirt to prove it.
We have locks of her hair. More importantly in a little box wrapped in a blankie we have what is left of Lehna, a pile of ash, with no kisses or toys or happy memories, nothing but a little cardboard box.
The more time passes the more I blame Kaiser for the way in which they handled the situation and the manner in which they treated Beth. As time passes, my ideas conform more to Beth's interpretation of what happened no matter how far apart they may have been six to eight months ago.
It was the manner in which Kaiser handled–or should I say "mis-handled"–Beth's medical records that led me to change my opinion and that change has caused me an incredible amount of grief and made it difficult for me to return to the corporate "world" again.
I am attaching part of an email I wrote as the cover to a "Lessons Learned" document I submitted to Kaiser leadership last November–this is before finding out that our daughter's medical records magically re-appeared (without a name, date, or MRN number at which point I stopped really trying to help Kaiser and "gave up" any hopes of things ever working out).
Anyway, for a small taste of what my opinion of Kaiser's methodological weaknesses may be I am attaching part of the cover letter to my Lessons Learned doc, dated 11/10/2006:
{The two most common reasons for a software implementation to have "issues" are 1) data integration requirements for all existing legacy systems are problematic and systems don't "talk" to one another or 2) late in the game additional requirements and/or wishes are introduced, often times leading to a condensed time line for the creation and testing of those changes. Both will potentially impact the stability of a given system.
From an organizational change perspective, the two most common deterrents to effective change management are 1) lack of effective, overt executive sponsorship and 2) conflicting messages either in type or decree. All of these issues are evident in KPHC in some degree or another.
I still believe the major problem here is communication and the major communication problem is a lack of some measure of centralization and control of the release of information.
I disagree in principle with the manner in which we are conducting our testing; I am not referring to our team but rather the totality of entities involved in requesting, testing, and promoting code into a production environment. I realize this is not news that I disagree and I will continue to raise this as a concern as long as I believe it continues to be problematic. My analysis is attached . . .}
There are a multitude of problems within Kaiser and certainly a multitude of "potentially" serious problems (in my opinion—realize, though, that this is only my opinion).
I believe, within the context of "Best Practice" methodologies—and a Kaiser manager once told me, to my face, "F*@K your methodology" (only the impending birth of my daughter stopped me from leaving and raising a stink at the time; yes "Kaiser cares")—a VERY strong case can be made that Health Connect poses a potential risk to all Kaiser members and I believe a strong case can and perhaps should be made that some level of governmental oversight should be applied towards addressing potential risks within Health Connect.
In a nutshell, all the ways in which a software implementation could go wrong I believe went wrong (WAY wrong) with Health Connect.
But "projects" mean little when life and death is at stake and so, to cap off my narrative, I am including the email I wrote the morning after Lehna's death, informing my co-workers that I would not be coming in to work that morning. Here is the text, as I wrote it, on March 6, 2006:
{Our beautiful baby daughter, Lehna Jordann, died in utero this past weekend. Beth was induced and she gave birth to Lehna, stillborn, Sunday morning at 3:44 am. I am telling you this not to make you feel sad, because I know many of you will feel sad both for the situation and for me, but to let you know how my experience is likely to impact my short-term commitments to Kaiser.
I also know that many of you know me and have heard me as the silly joyous hopeful 51 year-old expectant father-to-be go on and on about Lehna and my hopes and dreams relative to the child and, as a result, I realize this also adds to your sadness for this situation and I truly feel your pain as you try to feel mine. Some of you have had experiences like mine, perhaps not exactly, but you know the sense of loss personally and deeply, too.
On Thursday morning, I went with Beth to the doctor for a stress test and ultrasound. The doctors told me to basically hang out, everything looked good and the possibility of the baby saying hello before the end of the day was very strong. On Thursday night, Beth thought she was in labor so we drove to Walnut Creek and went to the triage room in Labor and Delivery. We were there for a few hours. The monitors showed the baby's heart beating away but we were told that it was not time and sent home. Beth was past her due date and if Lehna didn't come on her own we were scheduled for next Wednesday, 3/8, to have Beth induced.
On Saturday Beth said she felt as if the baby wasn't moving. We assumed this was the "calm before the storm" and the baby was getting her sleep so she wouldn't be tired when her parents kept waking her up to kiss her and try on different outfits. I assumed everything was fine but we went to Walnut Creek Saturday night just to make sure and that is when we learned that Lehna had already died. The next 24 hours were crazy--Beth was admitted and induced to have labor, she had Lehna at 3:44 am and then we stayed with Lehna and looked at her and held her and loved her and tried so so hard to capture something of her to remember.
All parents think their children are beautiful and will go to Harvard and win Wimbledon and become King of Norway but please believe me when I tell you all that this child was truly beautiful. She was 7 lb 13 oz and 20 3/4 inches tall and she was even prettier than I could have imagined her--and I imagined her as being pretty special. Lehna's physical appearance only adds to our bewilderment as to how such a beautiful well-formed baby could suddenly just die.
The irony is not lost on me that my professional role as someone with some level of responsibility for planning and developing testing methodologies for a hospital should see their child die in that same hospital when all the diagnostic tools failed to uncover any problem and the doctors have no ideas as to what caused her death.
Also, I want to thank you for the lovely baby shower you gave to me last week. I apologize for not responding earlier but so much was going on Wednesday and Thursday and I talked with Gilda and I planned today to send a formal thank you which I will do later; I promise. Beth and I appreciate so much your kindness and I slept last night with one of the little blankies you gave us for Lehna and I know that she would have loved everything, too.
I can't figure out why this happened. I try and make sense of it but it is beyond me to understand. By nature I am driven so much by emotion. My professional life, though, is driven by my ability to analyze, understand, and detach. This means this, this and that lead to a probability of this, methodological dictates say this should be so and this shouldn't.
As such these modes of being and thinking are like two different engines on the same train. The analyst is a skill, pure and simple, one I can literally turn on and off light a faucet. The other half, the artistic emotional half, is not so easy, though, to turn on and off. It is because of this duality of nature that I feel that, for now, I need to stay away in order for the feeling me to have its time. I can go hard core methodology RFA Project planning etc in bursts but right now I cannot sustain that.
Give me a few days and I will be back, perhaps remotely for day or two but I will be back.
This leads to another issue which is how will you all respond to me when I do come back. I don't want you to feel as if you have to wear black in my presence and avert your eyes and shuffle away in fear my personal sorrow is contagious. It is not. When I come back I hope you will treat me just as you did before and I am hopeful, too, that I will be professional enough to keep everything in order so as not to negatively impact you or your ability to get the things done you need to. I will not be a bottleneck for testing but I will be our of pocket for today.
Thank you all for your friendship. Some of you have been friends of mine for many years and others of you I have know only a short while but still you have all been so good to me throughout my time at Kaiser. If I have left anyone off this please let them know and forgive me, too, for not personally writing to you.
Thank you for reading this for me and I will see you all very soon.
Andy
