Between the conversations going on in the comments section of the post titled "Do Preemies Feel Pain" and a recent conversation I had with someone in the field, I am left wondering what "first do no harm" really means when it comes to neonatology.
I do have a hard time thinking that neo's are out there doing harm on purpose or maliciously. I'm sure there are some, but for the most part, I am the type of person who feels that there is good in all.
So, that leaves me questioning how they do it. Are they only resuscitating very early preemies because the parents request it? Are they all offering comfort care? Do they feel they are doing the right thing? Are they driven by fame (wanting to save the most or the earliest)? Are they driven by money? The God complex? The baby Doe laws?
Do they wonder what happens to our little ones? Do they really want to know? Does the knowledge of the adverse outcomes change the way they do their job?
Am I telling my story for nothing?
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The answer, of course, is "it depends" (or maybe "it varies"). Different physicians have different reasons for what they do.
Most of the neos I've known try to respect the parents' choice in regard to comfort care vs resuscitation for very early preemies.
Sometimes our docs regret resuscitating a particular preemie because it becomes very difficult for the parents to approve withdrawal of treatment.
ONE time I watched a physician pressured by the baby doe laws. The referring physician (we used to do transports) demanded that we transport the baby to our hospital. He had badgered the parents into signing the consent form. The baby was clearly NOT viable. Our doc spoke with the parents and verified that they'd been pressured into signing the consent. We transported the baby because the referring physician threatened to call the baby doe hotline (an abuse of that phone number, IMHO).
When we got back to our hospital, he withdrew care and called the parents to let them know that the baby had passed away peacefully after we had done what was possible (essentially nothing). Nothing could possibly have been done to keep that baby alive for more than a few days -- it was over 20 years ago. The parents didn't want the baby tortured. None of the nurses at work that evening had any objections to the physician's actions. We just wish he'd been able to convince the referring physician that transporting a dying baby was not only futile, but cruel.
At the risk of being repetitive, I'd like to reprint the words of Dr. William Silverman, the "founding father" of neonatolgy about a point at which he thinks pediatrics took a wrong turn. There's more to it,of course, but to begin, here is what Dr. Silverman wrote in 1992:
"In the mid- and late 1950s the number of persons present, and the levels of intervention in delivery rooms and in premature infant nurseries, began to escalate. This also marked the beginning of the ongoing controversy about what shall, and shall not, be considered 'overtreatment.'
"I can illustrate the abrupt change in attitude and in action by a dramatic incident that took place in a delivery room on our obstetric service. It occurred when a new chief of obstetric anesthesiology was called to be present at the delivery of an extremely small baby at about 23 weeks of gestation and weighing roughly 500 grams. The neonate did not breathe spontaneously and had no pulse. The new anesthetist asked for a scalpel, opened the chest with one stroke, and began to squeeze the heart directly as he yelled for someone to intubate the baby immediately. No one prior to this had ever dreamt of using open-heart cardiac massage for the resuscitation of the newborn. Needless to say, this incident had an electrifying effect on the crowd of open-mouthed young people in the room. This was a very loud signal indicating how far resuscitative efforts were now prepared to go. The fact that the neonate died a few hours later was dismissed as an irrelevant detail."
[Silverman WA. "Overtreatment of Neonates? A Personal Retrospective." _Pediatrics_1992;90:971-976.]
More to come...
Helen Harrison
Then Dr. Silverman wrote:
"It was soon clear, in the next few years, that an exciting new field of medicine was, in fact, inventing itself. The timid notion of a 'natural limit of viability' vanished.
"I want to call attention to the team-action as a significant feature of the new rescue program. "Team-think" provided a self-validating stamp of approval. Freeman Dyson has pointed out this dynamic in teams of physicists who worked on the atom bomb project. 'We did things together,' he wrote, 'that none of us would think of doing alone.' He became convinced that it is this diffusion of responsibility that allows people to put aside disturbing questions about the horrendous consequences of their acts.
"It was easy to get swept up in the exicitng developments of neonatal medicine, so long as you didn't ask too many questions about overarching goals. And, I must say, I did sweep my second thoughts under the rug. Now, as I look back at those exciting times, I am reminded of the Alice-in-Wonderland-like principle: 'If you don't know where you are going, any road will take you there'"
***
This "group-think," bowing to authority and peer-pressure, the denial and sweeping under the rug, play a huge role in encouraging people to do what they "know" is wrong (most would not want it for their children).
I could write an article about this topic, and in fact, I just have, so when time permits during the next few days, I'd like to share some of what I wrote, along with some reactions to the article so far, and some thoughts from informed experts and researchers about why neonatologists do what they do. It is a systemic problem, not just a question of individual doctors disagreeing over viabilty of a specific child, and money, unfortunately, plays a huge role.
Helen Harrison
Stacy, "Who knows what is in the hearts of men?"
We can only guess at motives.
Though I am sure that sometimes all of us do thoughtless things that result in hurt/harm . . . Are we absolved from guilt in these "mistakes"? I don't know the answer.
To me, the mandate to "Above all, do no harm" is almost meaningless because the interpretations, the motives, the legalities as well as the ethics are so easily manipulated.
There are a million disclaimers out there.
The only thing you/I can do is to consciously build up trust with a medical professional who we entrust with our child's health and safety. One at a time. Rather painstakingly, build trust.
Chris and Vic
Anita Catlin, RM, PhD, has conducted interviews with neonatologists and perinatologists who tell in their own words why they act as they do. I'll be quoting from her interviews in later posts, but here is some background information to the study:
--More than 54,500 neonates weighing under 1500 grams are born in the US each year; neonatologists have been advancing their resuscitation efforts to babies born at gestations as low as 20 to 23 weeks
-- neonatologists have little concrete guidance for decision-making from professional organizations such as AAP...there is no suggested protocol for initiating or withholding CPR, no suggestions about when to halt a resuscitation, or how to provide comfort care to the baby (and parents!) As a result, the easiest "safest" way proceed is to provide full resuscitation regardless of age, weight, or condition.
-- However, babies born below 27 weeks have about a 40 to 45% rate of severe handicap, with many additional serious handicaps that do not emerge until school age. Some say that parents be counseled that premature birth at 23 to 26 weeks gestation is clearly associated with a disabled child.
-- In contrast to practices in other countries (for example, France or the Netherlands) American neonatologists seem to disregard short- and long-term costs (human and financial) of "extreme" neonatal care.
To study these background issues further, Catlin interviewed 54 noenatal or perinatal physicians nationwide in semi-structured interviews.
The themes that emerged concerned:
1)role expectations (what should doctors do as part of their professional roles?)
2)uncertainty about rules, guidelines, outcomes, etc.
3) awareness (or lack therof) of high mortality and morbidity
4)internal and external forces (belief systems, social factors and pressures)
5) doctors' feelings of being "burdened" by their decision-making powers
6) continuing quandaries raised by prematurity and the technological imperative (what to do next?)
The article is Catlin, A.J. Physicians' Neonatal Resuscitation of Extremely Low-Birth-Weight Preterm Infants. _Journal of Nursing Scholarship_1999;31:269-27.
In the next post I'll give quotes that doctors gave concerning their "role expectations" and how they influenced their practices.
Helen Harrison
From Anita Catlin's article:
***
Role Expectations:
For 96% of the doctors interviewed, the role expectation of saving lives made them see resuscitation of even the smallest babies as necessary. One physician stated: "If called to a delivery, I will resuscitate."
Another said: "In the heat of the battle you can't think about withholding treatment...I don't go into battles in this unit expecting to lose...we go in to win."
Only 2 participants in the interviews (4%) stated that it was appropriate to allow some ELBW infants to expire. Nearly half
(45%) stated they would treat regardless of parental wishes.
For 1/4, withholding resuscitation should never be an option. They used words like "killing," "executing," and "pulling the trigger."
For others, resuscitation was simply a routine, neutral action they'd been trained to do:
"It's not a positive or negative thing. To me resuscitation is a procedure or a technique and I know I'm very good at it and I know I can make almost anything alive for awhile. It doesn't really have any meaning to me in terms of what's important later on.
On the other hand, a rural obstetrician said: "I just feel it is really hard for physicians to do nothing...but that's what we need to give ourselves permission to do, to say "No I don't want to resuscitate this really preterm baby."
More to come...
Helen Harrison
That should be Anita Catlin, *RN,* PhD
Also should read "Some say that parents should be counseled"
I also left out the end quotes on "...what's important later on."
Sorry for all the typos -- got interrupted by a phone call in mid-post and didn't have time to carefully proofread.
Helen
Judy, Those parents sure were lucky that your doc caught on to what was happening and helped the family!
Helen, I've said it before but it bears repeating... thank you for all that you contribute. I appreciate the info that you share. I remember talking to you, quite a few years ago, about Dr. Silverman. I began reading what ever I could find about him on the internet. I was surprised at some of his comments. I guess it was a type of honesty that I wasn't used to seeing.
Chris wrote: "The only thing you/I can do is to consciously build up trust with a medical professional who we entrust with our child's health and safety. One at a time. Rather painstakingly, build trust."
"Rather painstakingly" is a perfect way to describe it! We've only been in this for 9 years but in that time I have found it difficult to find a balance with docs.
We pick a specialist, wait months for the appointment, prepare for the appointment, give the lengthy history to the nurse or PA, have the doc meet with us for a few minutes only to find out that he/she is not the right one.
Back to square one.
Even when we think we have the right ones, that can change in an instant.
I took a little respite from this blog but since I have twin very early preemies, and have often expressed my positive attitude toward neonatology, I was alerted to this post by a fellow blogger.
In our case we were CLEARLY given the option to chose resuscitation or not should we deliver that week (I went in to L&D at 23.2 weeks.) We were given a NICU consult and presented the option to resuscitate or not BEFORE delivery was imminent.
We were clearly told that some people choose not to initiate medical intervention to save their baby/ies because of the high mortality and morbitity rates. We were also told some people do choose resuscitation at 23 weeks, and some decide to discontinue care, while others decide to continue; and this was dependent on how the individual infant did in the NICU.
Although I didn't want to believe I would deliver that week, I did hear how devastating delivery at 23 weeks would be. I felt the neo was honest, and yet not completely doom and gloom.
Once in the NICU, it was CLEAR to me that every neo (yes we met with them all at one time or another in the 122 day stay) cared about the long term outcome of these extremely preterm infants. The developmental specialsit also cared deeply, and currently follows the twins in NICU follow-up clinic.
We had family meetings, I asked a lot of questions and participated in daily rounds with the neos and NPs. There was never a "conspiracy" to hide the truth from us. We had two very critically ill children, whose extreme prematurity would result in long term issues, although those issues could not be predicted during their NICU stay.
I believe that because our NICU was family-centered at its core, *most* families had an *easier* time understanding the implications of their decisions and their options, which many times at 23 weeks included discontinuing care; an option we were presented with, and seriously contemplated early into our 122 day stay.
I have shared the story here before of our fellow "pod family" who were strongly persuaded to end care for their very preterm, very critically ill, baby. I witnessed time and time again them try and have conversations with this family about how futile their efforts were, and were finally able to have the family consent to a DNR.
So, I really do believe there are NICUs and neos who truly care about quality of life, and will honor a family's decision for the extremely preterm or dying infant.
If every single extremely preterm infant had a life filled with suffering, I do not believe resuscitation of these infants would be permitted. Clearly there are children who have a good quality of life. I believe this is a reason neos save these babies. In our case, there is NOTHING evident that would make us second guess our decision to resuscitate and continue care. What's most important to us is they are not living a life of suffering, (although of course we are very happy that they are meeting their milestones!) There is nothing about their health or development that we believe would warrant them not to be alive. I believe neos know this to be true for families and this is why they resuscitate these babies.
Hi Stephanie,
Every time I read your story, I find myself wishing that all NICU's could witness the care that you received. To be given an option is not the norm. It should be.
The neo at the first hospital I was admitted to (23.0 weeks - 9 1/2 years ago) gave me the same care as you received. He told me all that he knew about the long term issues that preemies faced. He told me that I had the option of comfort care.
When I was transfered to a level 3 NICU I was not told of any options. The neo's there were all about saving every baby, no matter the gestation.
I ended up having Paige at 25.5 weeks. At that point all babies are saved (at that hospital).
I don't want my comments to sound like I am regretful that Paige survived. My point is to show how different all NICU's can be. Some give options, some do not.
You wrote: "The developmental specialsit also cared deeply, and currently follows the twins in NICU follow-up clinic."
All of Paige's NICU docs/specialists/careteam followed her through the NICU follow up clinics also. We never heard from them after she was discharged.
It is my strong desire that LONG term follow up be REQUIRED.
I can't speak for docs as to why they continue to save ELBW babies. I am not even about to guess, that's why I opened this dialog. I do know, that the ones I have heard from, never once have they said that they save the babies because they feel they have a good chance at life. Some have mentioned parental pressure though.
Stephanie, I know emotions can become misinterpreted in the blog world so please know that I am not condemning what you've said. I know that my words have been taken wrong in the past. Again, I wish that more NICU's were like the one your babies were in.
Stacy,
I'm glad you are opening up the conversation on this. I can speak for why our neonatologists do what they do because I saw and witnessed their compassion for life and have run into them on a few occasions and they have always genuinely asked and cared how the kids are doing.
Additionally, one of our neos was a former student of my mother...who never missed a day in the NICU. (She was his Organic Chemistry lab supervisor his freshman year of college.) He definitely CARED about Serena and Edwin, and wanted us to know what the future could hold. He told us in a family meeting that Edwin in particular had about an 80% chance of having severe disability, specifically severe CP due to his many low desaturation episodes and the need for the more than our NICU's normal course of post natal steroids.
I am happy to report that EJ does not have severe CP, and in fact is pulling to stand and crusing now (he is 12 months adjusted age.) However, I am grateful he prepared us for this news, as I shared on the Preemie Mom Blogs group, it enabled Edwin, Sr and I to have a serious conversation about parenting a severely disabled child. We were prepared for what to expect, and frankly have been surprised at all they have dodged through thus far.
I am sure there are neos out there that feel pressured by parents and by the baby Doe laws. Some may be motivated by greed, a God complex, etc. But is it so hard to believe that there are compassionate neos out there that want families to go home with their babies and live a happy life?
I think it is just as likely as the neos out there who are not as goodhearted.
I've seen our NICU from both sides, and I know that while our NICU was terrible at communicating with parents in the unit, the NICU staff was very good when they went to meet with antepartum patients.
I particularly remember them giving a "wake up call" to a couple who was 22 weeks along with twins. They had been told that the limit if viability was 24 weeks (at that hospital), so they had assumed all they needed to do was get to 24 weeks and everything would be fine. The NNP did a good job of communicating the realities of a delivery at 24 weeks. After that meeting, they focussed on staying pregnant as long as possible, and not just til some magic 24 week mark.
Every family that was expected to deliver around 24-25 weeks was given the choice of whether to resuscitate, and even given the choice of whether they wanted to deliver vaginally if they were opting not to resuscitate. Before 24 weeks 0 days, there was no choice. It was comfort care only, as a rule at that time.
More from Anita Catlin's article:
Under the heading of "Uncertainty":
Two-thirds of physicians reported they resuscitated all infants 23 weeks and over. Nearly three-fourths (71%)stated that the inability to determine exact gestational age contributed to their decision to resuscitate.
[However, this approach is not evidence based. Prenatal obtetrical estimates are far more reliable than neonatal gestational age estimates. -- HH]
Neonatologists meeting with parents in advance of a preterm delivery was rare.
Uncertainty about gestational age and viability led to routine resuscitation and transfer of neonates to the NICU.
Physicians in academic centers reported they taught students to "resuscitate first" then "sort it out later."
One young neonatologist recalled "There's no one telling you the rules because there aren't any rules."
However, sending the baby to the NICU for further evaluation almost always meant escalation of treatment:
"Statistically, the babies that are resuscitated [at] less than 600 grams don't die now with our technology in 2 or 3 days but are dying in 2 weeks. In other words, it's prolonged, then the familiy gets attached and you get on the treatment train and once you get on the treatment train it is extremely hard to get off."
Many physicians used words such as these: "We always hope that this particular case won't be bad, this particular case will shine. This will be the one that all the bad things don't happen to."
Only one neonatologist expressed caution:
"We know that under 750 grams you have a poor outcome. Look, if the eyes are partially fused or fused, if the skin is very thin, the genetalia are not mature,...I mean if it obviously looks like a fetus even though it may be 650 grams, it should not be resuscitated. I don't resuscitate fetuses."
From Catlin, AJ. Physicians' Neonatal Resuscitation... Journal of Nursing Scholarship 1999;31:269-275
More to come...
Helen Harrison
It was our experience that "first do no harm" was non-existent in our nursery. I got the feeling that the physicians involved in our daughters' care were more into research than in doing what was in our best interest.
I think a clue as to whether or not a NICU IS truly concerned, is as one poster above commented about their inclusion in the decision-making, the obvious caring about the baby's comfort and outcome. There was none of that in our nursery. When we tried to question, we were shot down, we had no sit-down meetings with the neos in 5 months that we were there - barely saw them in fact.
When considering "first do no harm" - it is not just the infant that should be considered - it should be the infant, the parents, the family and society.
More on Anita Catlin's article about her interviews with neonatologists and perinatologists:
The following is from a section entitled "Awareness":
Every one of the 54 physicians interviewed was aware of the high morbidity and mortality for ELBW (<1000 gram -- extremely low birth weight) neonates.
[Comment: I would question this point. Although MDs *think* they are aware of high morbidity, many don't seem to understand the full extent or impact of the outcomes, as we have often seen in postings to this and other blogs--HH]
Physicians interviewed "reported that infants who needed continued support outside the hospital might have limited access to these services, and they knew that families might suffer financial and emotional hardships. The physicians talked about the trauma to families when they reached the million dollar cap on private insurance and resources were unavailable to continue treatment. A few talked about infants being abandoned because parents were overwhelmed. Physicians who provided neonatal follow-up (20%) described families destroyed. They said they were afraid to ask parents, 'Do you wish we hadn't resuscitated?'
Some physicians worried about going too far and perhaps needing to turn back. One neonatologist observed:
"We are starting to see how these kids are going to be when they are in kindergarten, when they are in third grade, when they are in high school. I think we'll soon be looking back and saying "Okay, maybe you guys shouldn't be resuscitating 24-weekers because the majority of them that live are a mess.'"
Six (12%) of the physicians had left high-tech medicine to work in the community. All expressed the concern that neonatology had gone too far. One pediatrician explained:
"At the time I left neonatology, one of the reasons I chose to leave was because I felt we were pushing the envelope too far...There were pushes to even become relatively aggressive with 20 and 21 weekers. Based on my experience in dealing with those children after the initial resuscitation, I began to feel that was not the right thing to do."
Physicians said they had trouble making parents aware of the serious problems their babies faced. Families often did not comprehend and nearly all insisted on major lifesaving interventions. Many physicians echoed this quote:
"They think [the baby] is just small. You talk about mental retardation, about cerebral palsy, bleeding into the brain and brain damage, and all these terrible things, but I don't know if it really sinks in. I try to give them a realistic picture of what the chances are, of the children not ever being able to care for themselves...Even when the baby goes home, you know, they look fine, they do the normal things that babies do, and it's not until later that [parents] are aware they're in trouble."
However, only 1 out of the 21 physicians who provided prenatal care discussed viability and fetal development with every family before delivery.
More to come.
Helen Harrison
Even though it's all part of one (very good) department, I think that at our hospital there is a shocking disparity between the information given to parents who spend time in the antepartum unit and those who arrive in the NICU after a surprise emergency. My friends and I who had different paths to prematurity at our hospital had very different experiences.
To me, it's just more evidence that catching high-risk mothers early and getting them all sorts of information while there's time to really process it is extremely beneficial.
If bed rest is good for one thing, it certainly gives you a lot of time to read and soul-search!
These are comments and quotes from Anita Catlin's article from the section entitled "Internal and External Forces":
Participants reported not being influenced by their own religion, philosophy, or personal beliefs. For example, despite the fact that 34% stated they would not resuscitate an ELBW infant of their own, 96% reported resuscitating the ELBW neonates of others. One explained:
"If you went to all the neonatologists and you asked them if [they] had a 23-week gestation [preterm birth] what would they want done? And you know what the bottom line is? My wife is a nurse and we used to joke that we'd go to a rural hospital that had no neonatologist and the baby would be born and deemed nonviable and would be allowed to die...So how hypocritical are you to tell parents they have no choice, but you would want that choice for yourself?"
[Comment: I understand that a poll was recently taken at a large gathering of neonatologists and 89%stated they would not want their own 23-weeker resuscitated. -- HH]
But some neonatologists talked about the importance of not looking at the statistics. One stated:
"I need to see the bell curve point where viability does not occur. Even if only 1% can survive at some level, you cannot exclude this 1% just because the other 99% will not survive...If one baby out of a hundred has a chance to survive, all 100 should be resuscitated."
About one third of the physicians felt organizations such as AAP, ACOG, or NIH had no business issuing guidelines for resuscitation. But for the other 60% guidelines were welcomed as "lightening the burden of decision making." Many stated they would be grateful for guidelines saying that resuscitation should only be done above 600 grams. They expressed concern that no one in US medicine was taking the lead to create such guidelines. One neonatologist stated:
"Maybe we should have enough guts to say 'We hit bottom' or 'We have gone too low and we need to backtrack."
[Comment: Where have these people been?!? There *are* recent guidelines by both AAP and ACOG and they state parents should have decision making powers below 26 weeks. These guidelines have simply been widely and purposefully ignored. -- HH]
Nearly all the physicians (91%) stated the legal system had no effect on their care of neonates, and 66% said they never thought about cost. Some talked about being specifically trained not to consider resources. Yet 26% described other developed countries such as France where decisions about national health needs and resources influence provision of care. Participants born in developing countries discussed how the priorites of societies affected health expenditures. One stated:
"After I finished training, I went back to my country and discussed beginning a neonatal unit with one of my mentors. [they discussed the costs involved] Then she said [with that amount of money] 'I can immunize the whole population of this country, provide better water, and better sanitary supplies, and wouldn't that be much more helpful?"
Several physicians made statements such as this:
"I think if nobody else is willing to look at these issues and make a decision [the insurance companies] will. I think they will look at the data and say, 'Okay, less than 700 grams or 600 grams or less than 26 weeks gestation, the outcomes are so bad we are not going to spend our resources on these kids and we are not going to cover them. I mean if the parents want to pay for it out of their pocket, fine, but we are not going to cover these kids."
Physicians stated they did not want to be the primary societal decision makers about care for ELBW neonates. One leading neonatologist stated:
"...You are asking [the physician] to be an ethicist; you are asking them to be an economist; you are asking them to be a minister of religion; you are asking them to be a judge and a jury and it is a big mantle of responsibility."
More to come...
Helen Harrison
I don't want to get into a resuscitation debate, but I do have a question that has been lingering since I first saw this post.
"First do no harm." It's an oath that all physicians in America must take.
Besides neonatology, what about oncology? Chemotherapy is a toxic agent that can damage the heart, the lungs, the kidneys, and liver. Many patients die from the side effects of chemotherapy and not the cancer itself. Chemotherapy causes hair loss, blurry vision, nausea, vomiting, and fatigue to mention only a few side effects.
Isn't this harm?
It, in fact, actually poisins the patient and kills many healthy brain cells and tissue in the hopes of killing malignancy, but it doesn't always work. The percentage of beating some pediatric cancers are lower than the long-term disability of ELBW babies, yet parents do it all the time.
What about the parents who go to pediatric oncologists? Are they ignorant or misinformed?
I know it's hard to convey emotions over the internet, so I want everyone to know I am honestly not trying to start a debate. I'm merely trying to express that harm might simply be a matter of perception. For the record, I do not believe that surgery without anesthesia is a matter of perception. Yes, I believe that is harm, at any age.
My son was covered with analgesia the entire time he was in the NICU. In fact, he ended up a 'junkie' and needed to be weaned off of morphine. We nearly had to administer it at home.
Also, he will be followed up in the NICU followup program until the age of 21 when he ages out, that is if he makes it to 21.
Good point Sara.
Because it seems that some had such a poor experience with the NICU their children were cared for at, I wanted to share some pieces of our NICU's website.
Dr. Bednarek, (quoted below) was the neo who gave us our NICU consult and was the the charge neo the first crucial month of S&E's life.
This is how ALL NICUs should be run:
Family centered care is synonymous with the UMass Memorial Newborn Intensive Care Unit (NICU), where over 500 low-birth weight and high-risk infants are cared for annually. In fact, we believe family participation is central to the well-being of their newborn. We encourage parents to actively participate in the care of their infant and to join the medical and nursing staff in our daily rounds when we discuss their babies treatment plans.
This approach to newborn care earned the UMass Memorial NICU benchmark status by the national Vermont Oxford Group, making it a model for other hospital NICUs throughout the world.
"Our philosophy is that every infant is unique and that families are the most important and constant factor in their infant’s life," says Frank Bednarek, MD, UMass Memorial chief of neonatology. "We respect and support the role of family as the primary caregivers for the infant’s life. Family centered care is the core value of our team."
The family centered care philosophy and input from former patient families drove the award winning redesign of the new unit, which opened in 1996.
Our NICU has 43 beds, including 27 intensive care beds in three pods designed for maximum privacy with soft lighting, noise reduction, and state of-the-art-care technology. Our 16-bed Continuing Care Nursery eases the transition to home as baby’s health and well-being improves.
Oncology has just been mentioned, and rightly so.
Here is a quote from a neonatologist interviewed for the Catlin article on this very topic:
***
"Why is a 24-week gestation human treated so differently from a 50-year old with lung cancer? Even if chances are 50/50, am I supposed to let a kid die? You do chemotherapy on a cancer patient who has close to a 100% mortality."
***
My response is this: If a well-informed adult chooses chemo for *himself/herself* knowing the risks and side effects, that is different from imposing such treatment (and NICU treatment is much worse!) on a baby whose family, looking at the same odds and risks, decides it isn't OK to put their baby through it.
It should be noted that many adults refuse chemo for themselves, and die quickly and much less painfully, than those who go with this gruesome treatment only to die in short order anyway.
Been there, with friends and family...
done that...
not impressed with this argument.
Helen Harrison
"Been there, with friends and family...
done that...
not impressed with this argument."
Well, first off, my comment wasn't meant to be an argument, and I believe I expressed that in it.
And, I can tell you that my mother has cancer, is terminal and has suffered far worse than my son (and I could argue that his NICU treatments were NOT worse than her treatments, which have left her debilitated) but I'm not arguing. I was merely pointing out that some medical treatment does more harm than good, and it's not always neonatology.
Sarah just made the point that I have so weakly tried to make myself. In the NICU we experienced, the staff made all the decisions. We were never even consulted other than to sign a consent form for surgeries, and then it was a last-second, hurry-up thing. It was as if our child didn't belong to us but to the hospital. The neurosurgeon never spoke to us even when we called the office and left notes on the isolette and asked nurses to deliver our messages. The ophthalmologist never called the unit to tell us he had left the office for the day and wouldn't be checking our baby's eyes after all, his going-home day. Instead, several hours later, his office called to say we would have to make another appt., which meant another two-hour trip and going through the long wait again. (We eventually took him to a different eye specialist.)I waited for hours for the chance to speak to the surgeon after my baby had an intestinal operation. He disappeared as well, but I finally got him at home on the phone! This, after I thought I was arriving at the hospital to see my child prior to him going down to the operating room. But they had already taken him down, and I missed seeing him. Then, I had to beg the nurses to be able to see him after surgery. (I had made a long trip to be there, yet I was barely even acknowledged.)
All this occurred at a children's hospital where telethons routinely tell us what great care these kids and families are getting! We aren't even weird people. We had catastrophic insurance, stable jobs, college degrees, and lots of support from family and friends.
But suppose we had an older baby diagnosed with cancer, and his chances of recovery with treatment were 10 percent. You can bet we would be consulted, and the hospital wouldn't just "take" him and make all the decisions and put him through gruesome treatments and experiments without our consent.
At least 23Weeks Mommy had a caring NICU. They aren't all that way.
I know of no other patients, other than preemies, who are treated so poorly, and yes in our case, I would call it "disdain" for their their families.
Sarah, I am so sorry to hear about your mother's illness. My mom also had terminal cancer and went through chemo and radiation. It was her choice, and it probably did prevent the tumor from growing so that she was not in pain, just extremely tired, when she passed away.
She did, however, have a Living Will, that specified what treatments she would and would not consent to. So she was never on a ventilator or feeding tube or anything that she believed would be "extraordinary measures" to prolong her life when she knew she was terminal anyway.
You and your mom will be in my prayers.
Why such hatred/distrust of doctors on the whole? Why just at neonatologists?
Through three pregnancies never once did my OB say anything or give any information as to what my child would face if he/she were born early. What good is bashing neonatologists about not counseling parents if the OBs are not giving blanket information to all women (not just the high risk)?
Do you, Ms. Harrison, carp on the obstetricians as well? Is there such literature studying the practices of OBs regarding their counseling of patients?
(And this is nitpicky, but the Hippocratic Oath does not contain the phrase "First, do no harm".)
--One without a blog
As I've said before I read some comments about not being informed and I am floored that you all were not told of any risk or the possible outcomes of having a preemie. From day 1 we were told of all the risk. Our neo's were wonderful, they called my cell phone on more than once occasion and told me Kellars test results, how his xrays looked, how is head u/s had changed. I had more than one meeting with the dr's, the patient care coordinators, they called my hotel room to tell me when they were switching vents, if Kellar was having to have antibiotics started, if I for whatever reason had left the nicu to grab a bite to eat, go home and rest and something happened that I needed to be informed of they called me. There was open communication. They told me the risk of cp, deafness, blindness, mr, there was no "sugar coating" anything. There was 1 dr I did not see eye to eye with, not bad considering Kellar was there 117 days.
Another interesting discussion.
I want to second the thought that all doctors, should discuss the risks of prematurity, not just the neo docs. I have seen so many different OBGYN's over the years from moving all around and as someone with two uteri, i have always been at risk for a premature delivery and yet every doctor spoke to me about miscarriages and or a healthy baby but not the in-between.
My thought is it all goes back to societies fear of disabilities and about being frank about this topic.
My son Elias was born via emergency c-section between 24 and 25 weeks and as i was knocked out I did not have a choice in his resuscitation.
And yet he was born at a small hospital in Alaska with family Centered Care so I was involved in all the decisions during his stay and got to know all the doctors personally. And I'd say, as Judy started this discussion, that they all have their different reasons for what they do.
I returned to the NICU to work as a Parent Navigator when my son was two and my first project was to replace a couple of the life-size pictures of full-term pudgy babies and healthy, able children that loomed over parents as they walked through the maternity ward to the NICU with pictures of NICU babies and children.
The NICU staff supported this move but i had to fight with the head of the maternity center and the marketing director because they were worried these images would scare the pregnant women who came to the hospital for tours.
And it is this attitude that is part of the problem, that keeps women from knowing all the possibilities involved with pregnancy. Thanks for opening the door a little wider.
Kellar's Mommy, Your neos treated you the way a baby's mom should be treated. Thank goodness, not all the docs are as unconcerned with the parents as some of ours were. Once, when I called the NICU to check our son, the nurses on duty didn't know where he was! Not only had they not informed us that he was being transferred to a step-down unit, they had to check around to find out what unit he was in!
We (and we ended up having to contact an attorney) transferred our child out of that hospital not long after. Finally, we found another hospital where the neos & nurses treated us and our child with a lot more care.
Our experience is one reason I am concerned about possible universal health care. There are so many questions. Would parents be able to choose their physicians the way they do now (or at least the way their insurance group does)? I think a government-run health system would be a mistake, especially after having already dealt with the red tape and apathy of a state-run hospital and some government healthcare agencies.
To anonymous 10:05 AM, who asked:
"Do you, Ms. Harrison, carp on the obstetricians as well? Is there such literature studying the practices of OBs regarding their counseling of patients?"
***
You bet I do.
My own recent article, which I'll get to in due time, puts the responsibility squarely on the shoulders of the obstetricians and other prenatal caregivers.
All parents need to be given the facts about prematurity well in advance of the delivery room. My argument is that neonatologists have abdicated responsibility here, and really aren't available to parents in a timely manner in most cases, anyway.
The education and decision making has to start *much* earlier ( like high school.)
I just read an article in the New York Times (Science Times section) in which women stated that they wanted fertility treatments that resulted in multiples because it was less costly and phsycially demanding (to them) to get their childbearing over with in one pregnancy.
They cited the excellent survival rates from NICUs as reasons not be afraid of having their babies born prematurely! Someone needs to tell him that almost all of these children suffer brain damage and that twins and other multiples do even worse than singleton preemies.
The statements by these women is an indication of a major breakdown in prenatal (and preconception) education! I urge everyone reading this blog who shares my concern about such ignorant attitudes to write to the New York Times (Science Times) and help educate these women, their physicians, and the journalists who write these clueless articles.
Helen Harrison
Back to Anita Catlin's article:
This from the section entitled "Burden".
[I should note here that obstetricians as well as neonatologists were interviewed for this study.]
From Catlin:
"Role expectations to perform, uncertainty about resuscitation criteria, and awareness of morbidity and mortality contributed to the burden expressed by nearly all physicians (87%). Obstetricians worried about the morbidity of ceasarean section for ELBW deliveries, special needs of infertile women, colleagues who tried to resuscitate fetuses born during termination procedures, and the need for obstetricians and neonatologists to share matched treatment goals. While most participants stated that they were expected to resuscitate all neonates at 500 grams, they could not identify where or how this expectation arose, and expressed ambivalence about whether it was morally correct. One director of a neonatology unit expressed this sadness:
'I don't particularly want my career and my life's work to be turning out children who are going to be severely disabled for the rest of their lives. I did not become a pediatrician to create morbidity.'
"Many reported they had never talked about this burden to anyone nor did they discuss it with their colleagues. Several mentioned lying awake in bed at night and wondering 'Did I do the right thing?'
"Another neonatologist commented:
'I just agonize over some of them...You are sorry for what you did. But you don't know how you would have changed or how you would have decided differently or where you could have gotten off, whether the parents would agree with you or not, whether you are making decisions for the right reasons.'
"Several spoke of the suffering experienced by those associated with the NICU:
'You see so many people suffer. You see the children suffer, you see the families, you see the nurses and everybody that works there go through this over and over again. You get so tired of death. You get so tired of disability and chronic handicap.'
"Another burden was confusion about neonates who did not immediately expire. A few(16%) described their decision first to withhold resuscitation, then to resuscitate when the neonate they had deemed nonviable did not expire within an hour. They stated that they knew how wrong this probably was but did not know what else to do. A significant burden was the disagreements that occurred between obstetricians and neonologists, and between physicians and nurses. Some contemplated leaving their field. Some chose to stop neonatal follow-up. One high-risk obstetrician stated:
'I might have done different work had I had a better understanding of what it was. In a childish way I made a decision to doll-up my career, and this neonatal medicine looked so dramatic and heroic to me and I really thought that it looked like a courageous line of work. But then...in reality it is very unpleasant making these decisions and very stressful and really awful. I rarely feel like a hero now.'"
More to come
Helen Harrison
Instead of quoting the article by Catlin, could you give us a source, a journal in which to find it? I'm not suggesting that you are being selective, but I prefer to be my own editor.
To anonymous 3:24 who prefers to be his/her "own editor" :
I have already given the full citation for this article, see my February 19 post (2:34) in this blog thread.
And if you would like to download the article, and many similar others by Dr. Catlin, I will once again give her website URL:
http://www.sonoma.edu/projects/neonatal/
Helen Harrison
Some food for thought. This was on CBS news tonight.
http://www.cbsnews.com/sections/eveningnews/main3420.shtml
If you click on "watch live simulcast" you will have the option to watch the video from tonight's broadcast.
the remainder of the address was cut off
main3420.shtml
Anonymous (one without a blog) wrote:
"Why such hatred/distrust of doctors on the whole? Why just at neonatologists?" and "What good is bashing neonatologists about not counseling parents if the OBs are not giving blanket information to all women (not just the high risk)?"
**I want to be clear in saying that I do not hate neonatologists. I feel the state of misinformation runs through many lines. From the media to the OB's and on to the neo's. And, not everyone in the above mentioned fields is fueling the misinformation. But, everyone has a long way to go. There are still, to this day, parents being told that all preemies catch up by age 2 or 3.
Anonymous also wrote: "(And this is nitpicky, but the Hippocratic Oath does not contain the phrase "First, do no harm".)"
I wasn't trying to quote the oath. I was merely using a term that most lay people identify with when they hear it.
Thanks for the link Nancy. It will be interesting to see what Dr. Gupta has to say.
The only thing I couldn't find was the timeline. Is this going to be a daily feature or weekly. I'm sure I missed it as I was reading it with a sick toddler at my feet. lol
Thank you, Ms. Harrison, for the information. I don't read this blog regularly and often don't take the time to read all the comments.
I just went to the CBS news site and saw the episode. Thanks Nancy!
The episode was filmed at the same hospital in Arkansas where I believe Dr. Sunny Anand now practices. Dr. Anand was featured in the recent NY Times magazine article which started the pain threads on this blog.
Back in 1986 Jill Lawson (preemie mom from Maryland) and I, with the encouragement of Dr. John Scanlon, a neonatologist, came forward in the press (Washington Post) about the unanesthetized surgery issue.
Three months after our media campaign began, Sunny Anand's studies on the need for anesthesia for surgery on preemies -- studies which had been previously ingored by med journals -- were rushed into publication in the New England Journal of Medicine and elsewhere.
Dr. Anand credits our parent campaign with paving the way for recognition of his research.
Shortly thereafter, Dr. Anand came to dinner at our house. Dr. Anand is a Sikh and wears a turban. I explained to him, before he met our son Edward, that Edward -- who has had many shunt surgeries, some without anesthesia -- had a (quite understandable) terror of anyone wearing headgear and of doctors. (In fact, Ed had recently freaked out and tried to tear the scarf off the head of a family member who had just lost her hair after undergoing chemotherapy.)
But when Ed met Sunny Anand, he seemed very peaceful and unaffected by Sunny's turban. This was amazing to me! I couldn't help thinking Ed may have intuited that this man was a good person and true friend of preemies.
Helen Harrison
"The only thing I couldn't find was the timeline. Is this going to be a daily feature or weekly."
I'm not sure about the timeline, but from what I gathered when watching it, it is a series they are doing on pain in general and the episode tonight was the only one in regards to preemies. There were links on the CBS website to the other stories they have already run on pain management as well.
I don't typically watch the 6 o'clock news as that is homework or dinner time, but I actually had the house to myself for about 4 hours tonight!!
I was surprised when I saw the preview for it because it was so very relevant to the discussion that was going on here. I will keep my eyes out for further episodes on it though.
FYI...I asked preemie moms who frequent my blog to share their experiences with NICU consult or lack there of, opinions of neos in their NICU, their perceived understanding for why as Drs they do what they do, how much they were or were not told about long term outcomes, and their overall perception of neonatology and their particular NICU.
Out of all 8 responses from babies born under 26 weeks gestation, (I'm only counting these respondents for this point), the overall consensus was they were informed of the long term outcomes, given the option of comfort care vs resuscitation (there were 3 who were born at 23 weeks, and all 3 of those parents were presented with the option of not resuscitating). A 24 weeker who went into full cariac arrest at birth was presented with the DNR option right away (our fellow NICU buddy) and every responder was grateful to neonatology for what they had done for their child. One responder, mom of a 26 weeker was not given options, and acknowledged it was because of his perceived gestational age even though he physically was responding more like a 23 weeker. In spite of this, she still expressed great thanks to neonatology and acknowledged the interest and desire of neos to still inquire how he is doing post-NICU.
Now granted this is only a handful of participants, however, I think this speaks for the changes that are going on in NICUs across the country.
With more informed consent and parental involvement in NICUs, I believe this is why we see parents with extremely premature children who see neonatology in a positive light. When a parent is aware of the possible outcomes and given an active role in treatment and decision making, I have seen a stark contrast in their perceptions of neonatology and the tone in which they speak about their child(ren), regardless of that particular child's health or development.
It's great to have research and studies, however, I think what speaks louder is looking at how things should and could be in NICUs, and noticing a similar trend in parental reaction to their child(ren) and what neonatology has done for their child(ren) when the parents were informed and their feelings/beliefs about treatment were respected.
Stephanie, because emotions can be misinterpreted in blogs and because I received an email from one of your current readers (since your blog is now open only to who you choose to let in) about what was being said, I am going to choose not to respond to your comment.
Now, to conclude Anita Catlin's article, in which the neonatal profession speaks for itself:
This section is entitled "Continuing Quandaries"
A frequently expressed belief was that children might be better served if funds for neonatal intensive care were used for other purposes. One physician stated:
"I would like to see the nation focus on prenatal care and the prevention of prematurity like they did on polio. Clearly if you are going to attack the problem, rescue in the NICU is *not* the way to attack it."
One young physician summarized the need for continued debate:
"I think that healthcare has to be more responsible and reasonable, and we have to draw limits on this complete libertarian autonomous decision making we have in this country. We need to define the limits of viability. We just can't use up all these resources. We need to immunize other kids. We need to educate the kids that are born viable, and we've got get more responsible regarding not just healthcare, but the whole societal issue."
Here are excerpts and summaries from the section entitled "Discussion" in which Catlin discusses the interviews, their context and content overall:
"None [of the physicians] mentioned ... hospice or comfort care..."
"Participants in the study related a high degree of burden and internal conflict. Interviews were often intense, necessitating a debriefing phone number of an ethics consultant on the consent form. Physicians expressed uncertainty and disagreement over ELBW resuscitation and little venue for discussing this."
"Continued physician participation with, and education of, the public is needed. Through public forums and joint committees of professionals and community members, several states have developed protocols for neonatal decision making [ECHO, 1997 -- in California and WAPC, 1997 in Wisconsin]....The US public health guidelines (United States Department of Health and Human Serivces, 1989) state that fetal development should be dicussed at every prenatal visit. This discussion must delineate that fetuses are not fully developed and ready for intact survival under 26 weeks gestation and that threatened miscarriages and preterm labor sometimes occur for physiologic reasons. Families who have heard this information often and who have internalized it may be less likely to 'want everything.'...[Neonaologist, Jon] Tyson discussed the 'ethics of evidence,' the need to know that technologies have been properly studied, subjected to controlled trials, and statistically validated as safe before being implemented...
"It is possible that proliferation of advance directives and the health care surrogate act for adults will expand into the use of these planning documents for the neonatal period. Predelivery discussion and decision making, even without resultant do-not-resusciatate orders could allow for alternative provisions of care for marginally viable neonates...
[Such as palliative or comfort care]
"The public, nurses, and other health care providers must be there to support physicians in changing their practices"
****
Thank you, Stacy, for "being there" with this blog -- you have not told your story in vain!
Helen Harrison
You don't have to respond, but I don't know what would be misinterpreted.
I happen to disagree that the only reasons that neonatologists do what they do are the ones you questioned in this post. I wanted to get feedback from parents who have babies <26 weeks, because medical journals just don't do it for me...real life experience is far more powerful in my eyes.
I'm agreeing that NICUs need to be changed, and parents need to have informed consent. What I've noticed, is that parents who have informed consent and decision making abilities have a better overall opinion of neonatology and of their feelings related to how their child was treated in the NICU.
I thought part of the purpose of your blog is to get to a place where parents are informed and able to make choices for their child's care? So what's wrong with asking parents what their experience was?
And yes, my blog is private...invite only, for the same reasons you took the personal pics of your blog. My blog is about my children, which means picture posting is vital to how I want it to operate. Because of this, and other reasons including more privacy now that Edwin is professional athlete whose name is googled many times per day, I opted to make it private. There is no "dark" reason why I made my blog private, and many other parents who include pictures of their children and families have done the same.
From Helen's post. .
'You see so many people suffer. You see the children suffer, you see the families, you see the nurses and everybody that works there go through this over and over again. You get so tired of death. You get so tired of disability and chronic handicap.'
This statement is a bit of a shockarooni - REALLY? From everything you hear about the "miracle babies" that are touted in the media, it seems difficult to believe that people in the NICU are "so tired of disability and chronic handicap."
Furthermore, even IF THEY are tired of it, imagine the family that has to deal with this 24/7 for the rest of their lives! Neonatologists and NICU nurses (poor things) CHOSE this, AND they get to go home after their shifts. Parents who have had no choice in these matters, do not get to leave at the end of their shift. One of my very best friends who had a preemie daughter with severe, multiple disabilities said in one of her dark moments "if I would kill her, I'd end up in prison and have more of a life than I do now." Of course, she didn't kill her daughter, however, her daughter did pass away naturally from complications of prematurity. Yet, this is the reality of some parents - the care is SO intense, the help so non-existent, for some, it is a spiral down after the preemie's rescue in the NICU - marriage gone, career gone, social circles gone, financial stability gone, future planning gone.
Are neonatologists and nurses in the NICU experiencing the same? No, it is quite the opposite - there are huge institutional and personal financial incentives to continue neonatal care JUST as it is.
So for this reason, it is difficult having respect for those who choose this for a profession and then whine about how difficult it is.
To anon 11:12,
From Helen Harrison
I wholeheartedly agree with you!
It is sickening to hear doctors complain about their "burdens" in print and at conferences. And then to hear them blame it on parents who want "everything done!"
To the extent that this occurs (and it clearly does, according to some posts on this thread), it (usually) happens because parents have no idea what they are asking before it is too late to turn back.
Parents need to know the realities and options before they become pregnant, and well before they come into the delivery room, but there is so much misinformation that feeds unrealistic hopes.
A survey conducted in 2004 of 89 sequential reports in the media on preterm infants revealed that the majority portrayed premature birth as a positive event. Most failed to mention ongoing health problems or disability. Only one report out of the 89 gave any statistics on the likelihood of disability.
Hospitals and neonatologists do their part in promoting the "miracle baby" myths. A prominent medical center, for example, boasts in its public relations brochure of a "dedication to excellence" that helps "babies as small as 12 ounces grow and develop into healthy young men and women." Really? How many? How do they define "healthy"?
In a recent issue of _US News and World Report_ (Aug 2007) media doc Bernadine Healy (quoting neonatologist Billie Lou Short) asserted that 95% of 2 pound babies "survive to live full and happy lives." At best, such statements are misleading; at worst they are demonstrably false.
So, I also reject the self pity of the docs. These people help set up the conditions in which parents want and expect everything for the most extremely preterm neonates.
As has been repeatedly demonstrated in physician surveys and interviews, the large majority of neonatologists give no information or options to parents(more about this soon).
Then these docs (and the hospitals they work for) cry crocodile tears all the way to the bank!
Helen
In trying to understand the reasons that docs (and nurses, too) feel burdened by a profession they have chosen, part of the explanation is that medical people are caught up in the culture of medicine.
Docs have been brainwashed--so intense has been their formative preparation for their profession. They experience total immersion in medicine (with sleep deprivation, with intense pressure to be smart and smarter about the huge field of anatomy/physiology, pathophysiology, technology, pharmacology, diagnosis and prognosis).
Not only this, but the expectations placed upon them to master the background knowledge; to appear intelligent and well-spoken--by patients and professors
--are brutal. To me, it is like the army--where they tear you down before they build you back up, because this is the only way you can make it through combat . . . with everybody on the same page, doing their job in a predictable way. (Nursing has some similarities, and some differences, IMO, as a nurse in the NICU and as a former college nursing instructor).
Part of the culture may be that you become one of the elite in society, enjoying hero-worship and a good income . . . although in old Russia, docs made less than plumbers and electricians because docs were doing a work they chose, whereas the plumbers and electricians had not had the freedom to choose . . . I heard this on public radio, yesterday, a piece about fair pricing . . .
But another aspect of the culture of medicine is that you put yourself out there, sometimes on the cutting edge, as in neonatology, where ethics and decisions are in a grey zone. Which can make you very conflicted about your chosen career . . . and about individual decisions based on grey-zone ethics.
Putting yourself OUT THERE is risky and I think medical people sometimes show the stress of living a risky life. They may whine. They may make mistakes. They may become arrogant to cover some of their doubts. They may burn out (and continute to practice anyway, even though they cannot possibly be 100% engaged in their burnt-out condition).
When they continue, we have sometimes said of them that they are caught up "on the treatment train". They don't know how to stop or reverse. They don't know what to do except to do what their colleagues in neonatology (or any other specialty) are doing.
In other words, they become trapped in the culture of medicine.
What do we want from them? We want our neonate/preemie to be treated as an individual. But the big Level III nurseries have to deal in groups and numbers in order to set up such an expensive intensive care unit, the NICU. So sometimes, the docs and hospital administrators have to look at averages and groups as opposed to individuals . . .
It is the salvation of the hospital ofen enough, that the NICU operates in the black, and some other nursing units do not.
But to me, the fact of consistently being a profit-center in the hospital waves a red flag. Pricey services that are in-demand (popular?) breed some not-so-ethical attitudes, I fear. How can you limit or curtail treatment in a profit center where the services are so much in demand? Silly! It is a supply-and-demand economy . . . you are in a good place if you are meeting a need/demand. Why would you STOP?
Of course, you would expect me, a nurse, to make some kind of defense for the system . . .
But I think it is worth seeing what we have set up and/or condoned in our culture--we have condoned supply and demand; we have condoned doctor-heroes; we have embraced "premium" children.
We have not embraced the inevitability that not every child conceived must go on to live a 100%full, healthy, productive life . . . We have all this as part of the warp and weave of the culture. We are at least partly responsible for condoning or embracing these values in our culture. It is not just the medical people who have foisted this off on us.
Chris and Vic
To Chris and Vic,
Sadly, the "demand" from parents for NICU care is often based on false advertising and misinformation, and, when that doesn't suffice, coercion from the NICU staff.
Numerous community groups around the country, along with the AAP and ACOG, have stated that well-informed *parents* should have the deciding voice below 26 weeks. Polls also show that the public doesn't want NICU care to be mandatory -- but that is how it is, and research (conducted by the neonatologists themselves) has repeatedly shown that care is given, despite parents wishes, at the large majority of NICUs.
The profiting hospitals and physicians are the ones doing the "demanding" here. The rest of us just "supply" the babies (and, of course, the money).
Helen Harrison
OK, I've been reading this blog for a few months now and I'd like to jump in from my vantagepoint-- I don't think I've seen anyone from our situation on here--
I have a former 28-week surviving twin, now 16 mos. (13 corrected). At 26 weeks, pPROM occurred on his brother; he was fairly well protected, in his own sac.
During my two-week hospital stay, despite a renowned medical program and knowledgeable doctors, no one sat us down and told us what to expect. The goal was to keep me on bedrest until 30 weeks or more. Made loopy by the meds, I asked few questions and my hubby was satisfied with the "level of competence," so we were nervous but not so enough! (Hindsight is 20/20.)
My sons were born by emergency c-section after secondary infection set in (I had a sudden "spiking" fever). My beloved firstborn was intubated immediately, and not until the second night of his life --when I walked into the NICU to find them doing a "procedure" on him-- did any neo. say, "he might not make it."
Not until the EXCRUCIATING choice was presented to us as to how/if to continue his care did anyone show us his test results, scans, etc. Not until we complained, yelled, cried, etc., were we "allowed" second (and, in our case, third and fourth) opinions.
My Jonathan Daniel lived three horrific days, during which many procedures were tried... For us, it was a matter of humane treatment to choose to "discontinue" his care... A horrific decision I would wish on no one... I am still hurt when I read online people crushing grieving parents for doing what we did. How dare they assume that anyone in our position wouldn't have wanted our son if he'd survived, but with disabilities?! (I read this on another site...)
My husband and I consider ourselves fairly intelligent people --just explain things to me, for God's sake! --and what we didn't know, we wanted, needed to learn! And yet, I echo the person who said, "it was as if the baby was not ours, but the hospital's." [I could really go into details on that --maybe I will sometime-- in regard to son Joshua's "intermediate nursery" experience.]
Anyway. Needed to jump in here somewhere; now I have.
BTW, I'm "anonymous" because I haven't established an identity, yet (boy, that sounds weird).
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