Blue
I listened to the pulsating, percussive music of the Blue Man group as they pounded on xylophone-like instruments. Each key was attached to a tube of a different length and when struck with a paddle gave out a sort of melodic thunking tone. When matched with the expressionless antics of the Blue Men, it was pure entertainment, entertainment only for the sake of itself, and I was thoroughly enjoying it.
In the midst of it, though, somehow my mind pulled me back to two days earlier and a 23 weeker in the NICU. He weighed barely more than 500 grams and was trying to die. After one and a half days of efforts by my partners and me, I was willing to let him succeed at it. We had tried everything. On the oscillator ventilator, his pH, a measure of the amount of acid in the blood, was less than 7.0, a level incompatible with life if it continued for long. I switched him to a conventional ventilator, thinking he couldn't do worse on it. I was wrong.
Mother, though, wasn't ready to have him die. Eighteen and single, she was terrified and trying her best to deny the situation. I gently suggested she come to the NICU and hold her baby, telling her that many mothers regret it later if they don't take the opportunity to do so. I also suggested that we might want to take him off the ventilator and have him in a private room with her while he died. The thought of it - the entire situation, really - was more than she could bear. At one point in our conversation, without saying a word she picked up the phone and dialed it. She spoke a few words into it and then handed it to me. " Who is this," I asked before taking the phone. "My granny," she replied.
Many people in the comments section of this blog have written about rights of parents and how they should be kept informed and given options about their babies' care. I agree. I like it when parents are interested and knowledgeable, or at least make an attempt to be. But we must also acknowledge that some parents are unable or unwilling to be their child's advocate, too scared or immature or somehow psychologically or emotionally incapable of doing the right thing. Who, then, should be the baby's advocate? We can quibble about who it should be, but in reality it is me.
Late in the afternoon mom came around and held her baby a good long while as he passed away. Her family and the baby's father came to be with her and in the end it was the best we and they could do with a bad situation. An aunt thanked me and even offered words of comfort to me, saying she knew we did everything we could.
Vibrations from a huge bass drum rocked me out of my reverie. A Blue Man was hitting the drum with the biggest beater I have ever seen. Another Blue Man was drumming on what looked like plumbing pipes, and the third Blue Man was eyeing giant rolls of toilet paper that would soon come cascading down over the crowd. The 23 weeker was out of my mind, and I was glad. It's not that I don't like my job. It's just that I like being off and having fun more.
In the midst of it, though, somehow my mind pulled me back to two days earlier and a 23 weeker in the NICU. He weighed barely more than 500 grams and was trying to die. After one and a half days of efforts by my partners and me, I was willing to let him succeed at it. We had tried everything. On the oscillator ventilator, his pH, a measure of the amount of acid in the blood, was less than 7.0, a level incompatible with life if it continued for long. I switched him to a conventional ventilator, thinking he couldn't do worse on it. I was wrong.
Mother, though, wasn't ready to have him die. Eighteen and single, she was terrified and trying her best to deny the situation. I gently suggested she come to the NICU and hold her baby, telling her that many mothers regret it later if they don't take the opportunity to do so. I also suggested that we might want to take him off the ventilator and have him in a private room with her while he died. The thought of it - the entire situation, really - was more than she could bear. At one point in our conversation, without saying a word she picked up the phone and dialed it. She spoke a few words into it and then handed it to me. " Who is this," I asked before taking the phone. "My granny," she replied.
Many people in the comments section of this blog have written about rights of parents and how they should be kept informed and given options about their babies' care. I agree. I like it when parents are interested and knowledgeable, or at least make an attempt to be. But we must also acknowledge that some parents are unable or unwilling to be their child's advocate, too scared or immature or somehow psychologically or emotionally incapable of doing the right thing. Who, then, should be the baby's advocate? We can quibble about who it should be, but in reality it is me.
Late in the afternoon mom came around and held her baby a good long while as he passed away. Her family and the baby's father came to be with her and in the end it was the best we and they could do with a bad situation. An aunt thanked me and even offered words of comfort to me, saying she knew we did everything we could.
Vibrations from a huge bass drum rocked me out of my reverie. A Blue Man was hitting the drum with the biggest beater I have ever seen. Another Blue Man was drumming on what looked like plumbing pipes, and the third Blue Man was eyeing giant rolls of toilet paper that would soon come cascading down over the crowd. The 23 weeker was out of my mind, and I was glad. It's not that I don't like my job. It's just that I like being off and having fun more.
posted by neonataldoc at 7:40 PM
26 Comments:
poor babe,poor mama,poor neo and staff.now...switch gears and look at 'the bulging bag' for an uplifting photo and welcome back!
I saw Blue Man Group in Chicago a little over 8 years ago (we used to live there). I loved it and have longed to go see them again.
A few years ago we were at CEDIA (a home theater expo-hubby designs systems for a very large corporation) and they had Blue Man Group playing to show off speakers. I planted myself on the floor, like a child, and let myself pretend I was there. My daughter thought it was funny that mommy was on the floor.
They are coming to a city near me soon (which is surprising considering where we live now) but we don't have a babysitter. Guess I'll just have to wait until hubby gets our theater done so I can sit on the floor and pretend again.
Unless you want to come babysit ND? hehe
Sorry to hear about the 23 weeker. I can understand how it must have been hard for the mom to hear it, especially at 18. Heck, I was 30 when it happened to me and I couldn't bear it.
On the topic of the 23 weeker and parents who can't/won't decide:
You might be interested in the article by Father John Paris et al in the _Cambridge Quarterly of Healthcare Ethics_2006, 15:147-151, entitled "Has the emphasis on autonomy gone too far? Insights from Dostoyevsky on parental decision making in the NICU."
Good Evening,
I was led to your post by a PR Specialist at a medical group organization.
Your posts are not only spot on but truly eloquent. As the mother of a 30-weeker now 3.5 years old and the Publisher of Preemie Magazine, I commend you for your work with the babies and their families - both in good and bad outcomes.
It is truly sad about the 18 year old mother of the 23-weeker but you did the right thing in telling her to hold her child in the end. Every parent I hear from that lost a baby talks about how important it was to hold the baby prior to death and even afterward.
By the way, if you are not aware of this organization, Now I Lay Me Down To Sleep (www.nowilaymedowntosleep.org), they are a free bereavement photography organization. Preemie Magazine highlighted them in a recent issue and I highly recommend them as a resource.
Respectfully,
Deb Discenza
Mom to a 30-weeker
Publisher, Preemie Magazine
I'm a mom of 29 weeker triplets. I was fortunate to have a mother that spent 20+ years in Peds at Hopkins, and had her as a resource. And even though I knew ahead of time that I was going to face a NICU experience, and tried my best to prepare, the minute I saw my children on a vent etc, all common sense went right out the door. I was scared, afraid, and no amount of knowledge was going to protect me from the road ahead.
I ended up befriending a young girl whose daughter was born at 30 weeks. She was alone, no family, and no support system. No one helped her, and I feel it created an additional burden on her. I wish that the hospital I delivered at had a better support system to help those in her situation.
We have that trite but true saying here in the UK: that I work to live not live to work.
How true.
My last concert was seeing the Kings of Leon. How cool were they. Wierd..very ..but cool.
Work hard, play harder.
I am sure you have in your mind a "split screen" of the dying baby and the Blue Man Group. It is not only in your mind, but in your heart. Like me, you may seek to reconcile the two opposing images. Your heart feels divided---much like mood-swinging.
There is no help for it, and it happens way too often. I fear our cortisol levels, even at baseline, are too high--which is to say, this kind of thing takes its toll.
IF it does take its toll, then I wonder if we get "better" and handline death/grief in close proximity to life/fun or if we are little by little diminished by the contrast and war between the two . . .
IF there is a resolution to this dilemma and an answer to this question, it must lie in regarding death as part of life . . . which the people who embrace a Zen way are said to do. The closes I ever come is by saying to myself (about the babies who die) "S/he is set-free of his/her suffering--no longer bound and tethered to the ET tube and vent and lines and monitor wires. Fly away, little soul. Be free!"
Chris and Vic
ND said:
Many people in the comments section of this blog have written about rights of parents and how they should be kept informed and given options about their babies' care. I agree. I like it when parents are interested and knowledgeable, or at least make an attempt to be. But we must also acknowledge that some parents are unable or unwilling to be their child's advocate, too scared or immature or somehow psychologically or emotionally incapable of doing the right thing. Who, then, should be the baby's advocate? We can quibble about who it should be, but in reality it is me.
If this is true, ND, then it is an indication that a change is needed. I am reading, over at Dream Mom, and Ex Utero's, about baby TOBY. Two sides of the story, so to speak. But look---24 hours have gone by since this child's birth and resuscitation. There have been many "changes in his condition," which have not been reported in a timely way, nor first-hand to the mother and/or father.
IF you made a huge effort, and joined with other members of the neonatal team (nurses, NNPs, social workers, etc) to keep the parents informed and involved, then they would be, well, involved! They would grow into their roles as advocates. They might even challenge you to explain more.
They would have bonded enough to be involved, really involved. They would be at the bedside, they would be shedding tears, they would be calling you, or you, them, daily, for updates--especially on a very unstable or critical infant.
(Maybe you don't want them weeping at the bedside or calling you every day . . .)
You need to bring parents along with you, so that they can make these decisions. You must lead, but they must have the final say, after they have been well-coached by YOU and the team.
Chris and Vic
I like the way you write. It's really interesting. Thanks for giving us a peek into your world.
ND,
I have this image of you grooving to Blue man group... puts a smile on my face.
C&V,
I think you have a problem differentiating between literary license and a medical license.
Ex Utero speaks of licenses--Do you believe those who read your blog(s) have license to question you or call you into accountability? Is it only another doc who may do this? Or can anyone do it?
I concede that you are damn-good at most medical decisions and prescribing drugs and treatments.
But I question your communication with patients and families---whether in real-life or in literary examples. Nor do I believe that you docs always try to imagine the long-term consequences of what you start in the NICU.
I really believe that if you cannot take the heat of criticism nor a lay person calling you into accountability, you should get out of the kitchen. Because there is more heat coming . . . regular people are more and more litigious; nurses are finding their voices; the media is in hot-pursuit of a story. You will be hearing from all these groups, and they will be saying "What did you do that for?"
Chris and Vic
C & V,
ND wasn't objecting to being taken to task, so to speak...ex utero was objecting on his behalf. So, no reason to respond as though ND himself needs to "get out of the kitchen." I've yet to read a negative response from him to constructive criticism.
C&V--Since Ex Utero doesn't write about cases he has seen personally (at least none that I can read) how can you call into question his relationships with parents? Do you personally know either of these doctors? Are you basing your distrust of their communication with parents on personal knowledge or on your experience with other doctors in NICUs you have worked in?
I've read the comments here and on Dream Mom's and Ex Utero's blogs today. Why are you so venomous today?
i can see the neo doc is doing his level best to offer any comfort or strength he can at a very difficult time.he consistently tries(does) to help and yes,at times,he must assume the responsibility of helping the baby when the parents are unable to decide or simply cannot.a heartbreaking situation is not made better by backbiting.let all of us help the baby,in whatever capacity we can,or in some cases help the family,this is very serious and not a case for us to argue.
Not argue?
I beg your pardon, Anonymous--it is only through challenging one another that things improve. Also, challenging the status-quo helps.
Professionals who supplant parents
--I find it an aberration of the natural order.
Rather, my point is to bring the parents along---keeping them connected to their kids in the NICU. Are YOU arguing that point?
Many are defending Neonatal Doc. He probably can stick up for himself, if he feels attacked. I am not attacking him--unless and until he feels he is more important than the parent(s).
Chris and Vic
When you enjoy going to work and doing your thing, and then enjoy going home and being with spouse and family, you've found the sweet spot.
How would one react when getting the news that their tiny little baby is dying? A question I can't answer and neither can you ND. Only one's who have been through it could tell us what happens with their psych when faced with such news.
In my rational mind, I would like to think that I could deal with it in the way it needs to be dealt with. But, I also assume that in that circumstance, my rational mind may not be at work.
c and v ,obviously something more than this discussion is troubling you,no one is personally attacking you,yet you react quite strongly.reasonable people may disagree,but arguing is not in the best benefit.
This comment has been removed by a blog administrator.
To Anonymous:
Many parents, and, I suspect, many professionals, are finding the commentaries by C&V enlightening and thought-provoking. I, for one, hope they continue and encourage substantive discussions.
Thanks, all, for the comments. Deb, I saw the article in Preemie magazine about Now I Lay Me Down to Sleep. Thanks for pointing it out. Helen, the library is getting me that article.
Cathy makes a good point. I don't know how I would react to news that my baby is dying, either.
I also think that Chris and Vic have (has?) a good point about bringing the parents along and making them understand. Although we try to do that, given that we and the parents are human, it doesn't always work out in reality.
The mama is so lucky. I would have given anything to hold my babies for 1 minute. My babies didn't make it past 8 weeks, and I never got to see them. I wonder if people know how hard it is to not have a baby to hold, or a body to bury. I would give everything I own to hold my babies for 60 seconds. Pray for my babies, and for me.
bWhatever it is that can clear work from the mind is much needed. I also enjoy what I do, but I know that I have to leave work at work or I am only setting myself up for (emotional,physical, mental) burnout. Honestly, I am finding it hard to separate home life from work. I haven't found my "blue man group."
I can't clear my mind of the work, the babies, their situations and circumstances, the care I provided, etc. I care.
I find that it is the worst when I work a few days in a row. After being off for a few days and allowing myself to recover I can clear my mind of the things I saw or did, yet.... I only throw myself back into it... and then I start all over.
My daughter-in-law was due to give birth May 3, 2007. About three months ago a routine sonogram was performed and something unusual was noted. She was sent for further testing and as a result of those tests, a genetic test was performed.
The results were 1p36 Deletion Syndrome, Ebstein’s Anomoly and VSD.
The prognosis was bleak at best. The doctors predicted with near certainty that the child would not be born alive and would probably only survive a few hours if he did survive birth. A DNR order was put in place and we prepared for the worst.
Initially, the cardiologist insisted that the pregnancy was to be allowed to continue to as close to the due date as possible. As it was he was going to have an infant with a heart condition. He did not want a preemie with a heart condition if it could be avoided. Shortly after though, he changed his mind and labor induction was started. It would begin in the morning and stopped at night. This continued for three days and on Good Friday, April 6, 2007 the boy was born alive much to the surprise of all involved. He is still alive today and is in NICU. He continues to breath pretty much on his own except that he has been intubated only to keep the airway open we’ve been told. No oxygen is being applied as of today. His O2 sat looks pretty good and his heartbeat is as regular as clockwork.
Physically, he looks very healthy and suffers only a minor deformity on his feet. His facial features look fine and he appears responsive to his environment. He is currently being sedated with Fentanyl as he likes to rip sensors and tubes off his body. He weighs less than four pounds.
The doctors are urging the parents to let the child expire as his future looks very grim. The doctors have assured the parents that any treatment performed on the child is an exercise in futility. Most certainly the heart operation will not be performed as it would not significantly improve his quality of life.
I disagree with all of them. Their track record at this point is not very good. I am concerned that the parents are being forced to make the only “logical” decision simply by not pursuing any type of aggressive treatment for the child. I suspect this has been going on since before the child was born. I could be wrong though. I’ve been wrong about things in the past and certainly hope I’m wrong now.
What I would ask of you is some aide in finding someone who will look at the child and either confirm or debunk the prognosis and present course of treatment. We need an advocate who will act in defense of this strong willed child who now lays in NICU fighting for his life. I have no reason to have much faith in a medical team that has been wrong about almost everything concerning this child. I’m surprised, frankly, that they guessed the right sex.
All I have done for the last six hours after learning what the doctors are saying is research, emails and phone calls. If anybody ot there has any ideas, I'm all ears.
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