Village
When Hillary Clinton first published her book It Takes a Village, I was a bit suspicious of it. It's not that I'm opposed to a child having other influences besides his or her immediate family, because that can be beneficial. I was concerned, though, that the book might deemphasize the role of the nuclear family because the whole village was there for the child. ( I didn't actually read any of the book. I just assumed what its content was.)
Lately, though, some comments on my blog have me wondering if the village concept of raising a child could be useful in some special situations. I think particularly of severely impaired children, children who can really be a burden on their families. These kids can take a tremendous toll on a family, perhaps leaving them with inadequate time for their siblings or maybe leading to marital strife and divorce. If we had a more supportive network for the families, if we shared more of their burden, then life might be better for all.
This is relevant to the issue of whether to resuscitate extremely preterm babies or not. Let's face it: The reason some people don't want their, or perhaps other's, very premature kids resuscitated isn't because they are afraid the baby might die; he's going to do that anyway if not resuscitated. The big concern is that he might turn out to be severely impaired. He could develop severe cerebral palsy, leaving him unable to walk or talk and incontinent even as an adult - and leaving the family with a life completely different than they had ever imagined. If all extremely preterm babies when resuscitated would either die or turn out normal (or perhaps very mildly impaired), we wouldn't have much of a discussion about resuscitating them. We'd go for it on every one. It's the possible burden of that severely impaired child that gives us pause.
Some may say that one of the reasons parents don't want their tiny babies resuscitated is not because they are afraid of caring for them but because they don't want to see them suffer. This is a legitimate point, but when parents are first thinking of this, in the delivery room with mom in preterm labor or with ruptured membranes, I'm guessing that it's the care of a severely impaired child more than its suffering that influences them.
So if society wants us to resuscitate babies even when they have a significant risk of having impairments - and if you look at the Baby Doe rules or the Born Alive act, society does seem to want us to do so - then society should ante up and make it easier for families with such children. And I'm not talking about a little help like some supplemental income. I'm talking about a lot of help, help with taking the impaired child into your home for weekends or weeknights, help with changing his diaper when he's 16 years old, help with controlling his emotional outbursts, help with calming him when he's crying from reflux heartburn. I'm talking about help that would truly give the family some respite and make their life better, day in and day out, and week in and week out.
I don't see society forming true village support for impaired kids any time soon. Talk to parents of such children; they are lucky to find someone to take care of them one or two weekends a year so mom and dad can get away by themselves for a break. I don't hear anyone clamoring to raise taxes so we have more money for services for these kids. A child's problems are the family's burden and will remain so for a long time. We will continue to not resuscitate some kids who would have turned out normal because we are afraid they might not be.
Lately, though, some comments on my blog have me wondering if the village concept of raising a child could be useful in some special situations. I think particularly of severely impaired children, children who can really be a burden on their families. These kids can take a tremendous toll on a family, perhaps leaving them with inadequate time for their siblings or maybe leading to marital strife and divorce. If we had a more supportive network for the families, if we shared more of their burden, then life might be better for all.
This is relevant to the issue of whether to resuscitate extremely preterm babies or not. Let's face it: The reason some people don't want their, or perhaps other's, very premature kids resuscitated isn't because they are afraid the baby might die; he's going to do that anyway if not resuscitated. The big concern is that he might turn out to be severely impaired. He could develop severe cerebral palsy, leaving him unable to walk or talk and incontinent even as an adult - and leaving the family with a life completely different than they had ever imagined. If all extremely preterm babies when resuscitated would either die or turn out normal (or perhaps very mildly impaired), we wouldn't have much of a discussion about resuscitating them. We'd go for it on every one. It's the possible burden of that severely impaired child that gives us pause.
Some may say that one of the reasons parents don't want their tiny babies resuscitated is not because they are afraid of caring for them but because they don't want to see them suffer. This is a legitimate point, but when parents are first thinking of this, in the delivery room with mom in preterm labor or with ruptured membranes, I'm guessing that it's the care of a severely impaired child more than its suffering that influences them.
So if society wants us to resuscitate babies even when they have a significant risk of having impairments - and if you look at the Baby Doe rules or the Born Alive act, society does seem to want us to do so - then society should ante up and make it easier for families with such children. And I'm not talking about a little help like some supplemental income. I'm talking about a lot of help, help with taking the impaired child into your home for weekends or weeknights, help with changing his diaper when he's 16 years old, help with controlling his emotional outbursts, help with calming him when he's crying from reflux heartburn. I'm talking about help that would truly give the family some respite and make their life better, day in and day out, and week in and week out.
I don't see society forming true village support for impaired kids any time soon. Talk to parents of such children; they are lucky to find someone to take care of them one or two weekends a year so mom and dad can get away by themselves for a break. I don't hear anyone clamoring to raise taxes so we have more money for services for these kids. A child's problems are the family's burden and will remain so for a long time. We will continue to not resuscitate some kids who would have turned out normal because we are afraid they might not be.
posted by neonataldoc at 11:04 AM
40 Comments:
There is a third reason these babies are not resuscitated Doc (actually, I suspect there are a myriad of reasons but since we are oversimplifying)- a third reason babies between 22-24 weeks are not resuscitated is that their parents are never given the option. They are told that there is "no hope" and that 24 weeks is the border of viability. This is apparently not the case where you work, but I can assure you it is the case in many other hospitals, including those with high level NICU's.
When I went into labor at 23 weeks I was not versed in survival statistics or what it might mean to have an extremely premature baby. All I could do was listen to what the doctors were telling me. If I had made it to 24 weeks, then heroic measures would be taken. If not, then there was no reason to try. In fact, our OB quite nicely told me I was really having what amounted to a "really late miscarriage." Delivering those babies and holding them as they died sure didn't feel like a miscarriage.
I am not alone in this experience. I have participated in various support groups and I can guarantee you that there are many women out there who had experiences similar to mine. So the decision to resuscitate or not is hardly exclusively the domain of parents. I know there are many arguing for the rights of parents to choose not to resuscitate in these extreme situations, and there is value in those arguments. But as this discussion extends further and further into the public arena I suspect you may have large numbers of parents stepping up, wanting to be heard, and saying, "Why are some parents given the choice, and we were not?"
BINGO!
ND, this is never going to happen--this village thing. Look at this time in history in our culture. We have always been and will continue to be "rugged individualists" in America. We are all pulling ourselves up by our bootstraps in individualistic glory. There is no talk of interdependence . . .
There are few community projects, goals. You may see the sporadic fund-raiser for the community member who has had a catastrophic accident and who needs help with medical bills . . . but this is not the norm.
Even people who are together in the same fellowship, as in going to a place of worship on Sunday/Sabbath, are not working together in the ways that you suggest (or that Hillary R-C suggests).
Voluntarism is not fashionable. We throw our money at problems--not our time.
AND being individualistic and insular has a certain selfish component to it, as well, I believe.
Take respite care for ex-preemies or anyone who is diabled. No need to justify that parents of ex-preemies with certain levels of disability need it. Your doc may even write a script for home health care or a home health aide
---but can you find an agency that can match your scheduling needs? Are you on a wait-list? And can you afford it? Will your insurance pay? What is your co-pay or deductible? This list of questions is a short list of obstacles . . .
If I have a full-time day job, what do I do? Day care won't take my kid, with his special needs. Respite care is virtually unavailable--in my area UCP provides one or two evenings a month, so that parents can get out of the house---after you've been on a waiting list for months or years. No day hours available . . .
Okay. Creative scheduling. I am a nurse, so I can work off-shifts or weekends, which I do. I work weekend nights. My partner is available to take care of Vic when I am working/sleeping. I need a home health aide a couple of times/month, for early dismissals from school or Vic's sick days. I use a private agency (that doesn't take Medicaid, is not Medicaid certified) and I pay $13-$20/hr., depending on what kind of care is needed for Vic). This is not nursing care--it is a home health aide. I used this start-up agency for about 18 months when my elderly mother was still with me--paying $1500-$2000 per month, and I only worked 2 5-hour days at that time!!! It is just not do-able. (I cannot throw enough money at this problem to solve it, and I have been trying for 11 years.)
Several times in the last few years, I have applied for great day jobs--one of them was the perfect job for me--but I really cannot take those jobs. The schedule just cannot be worked out.
My now-adult daughters helped with Vic in his early years. My neighbor put in one weekend night/day, too. My girls now have day jobs, and one has moved to another state. I actually had/have a decent support system . . . but not good enough to have a full-time day job.
I am totally okay with circumscribing my life a lot in order to be Vic's lovin' mom. I don't need to travel. I don't need to do entertainment-type things. No movies. No games--ever. We don't go out to eat even once a month. We DO get a pizza once a week, however--that is our splurge. It is only in the last year that I decided to spend money on Tae Kwon Do for Vic and the family. Once a year, on Bill's birthday, I will ask one of my adult children to watch Vic so Bill and I can go to a nice restaurant for dinner or a show.
I realize that I could ask more often . . . and thus perhaps foster more of a spirit of "it takes a village" in my adult children. I hesitate because Vic is not so easy to care for---and even his brothers and sisters don't know how to handle him (toileting, behaviors in public, meltdowns, etc.).
I do not have an answer. I have not done very well in the past 11 years with respect to involving others in Vic's up-bringing. My strategy has always been just to adjust myself and my own schedule and needs to accomodate raising him. I can get very down and depressed about all this from time to time (I call it "chronic grieving"). I don't think anyone has an answer.
Chris and Vic
Chris has it right.
We no longer live in villages. We put too much emphasis on self reliance, being smart, making money and having "me time" to bother looking around us and seeing that there are a lot of people who could use our physically present help.
The reason that parents sue their OB's, accusing them of causing disabilities that often have no known cause, is usually that they desperately need money to live without one parent's income, forever, and need help taking care of their child.
If we offered compassionate monetary support for parents of disabled children, such as a Social Security caregiver's stipend, it would reduce the risk of malpractice claims for the most-sued doctors.
I've often wondered why the AMA hasn't clamored for this.
To Neoantal Doc who wrote:
"The reason some people don't want their, or perhaps other's, very premature kids resuscitated isn't because they are afraid the baby might die; he's going to do that anyway if not resuscitated."
Have you read _The Long Dying of Baby Andrew_? I think many parents dread just this sort of scenario. And for good reason.
We don't have a fear of death per se, but, instead, fear of an excruciating medically protracted death.
Many of us whose preemies were "salvaged" as newborns (often against the parents wishes)are now watching our children die by inches, very cruelly, years later.
We care very much about our childrens' suffering.
Shamhat's comment sounds like a good idea. However, I'm afraid the allure of potential thousands of dollars via "jackpot justice" is too strong compared to a monthly stipend received from the government that would never be enough. I do not believe it would not ease the OB's burden, so long as there is a triel lawyer out there looking for a buck. I lost my baby st 22 weeks. Sometimes things just happen and are not the fault of our doctors.
I realize that I'm a hopeless cynic here but these days, it seems that people will use our justice system as some sort of lottery to try their luck. I used to work with auto accident "victims", and I had first hand knowledge of the tactics used all in the name of "justice".
And I'm not talking about a little help like some supplemental income. I'm talking about a lot of help, help with taking the impaired child into your home for weekends or weeknights, help with changing his diaper when he's 16 years old, help with controlling his emotional outbursts, help with calming him when he's crying from reflux heartburn. I'm talking about help that would truly give the family some respite and make their life better, day in and day out, and week in and week out.
AMEN brother!
To Neonatal Doc:
"and if you look at the Baby Doe rules or the Born Alive act, society does seem to want us to do so "
"Society" doesn't want all-out resuscitation of preemies if the polls, community meetings, and jury verdicts on this matter are to be believed.
The "rules" and "acts" you refer to were quietly pushed through right-wing congresses in an effort to appease fundamentalist right-to-lifers angered that Reagan, and then Dubya, failed to outlaw abortion.
The Baby Doe "rules" have been overturned in every court challenge. The current Baby Doe "laws" have yet to be challenged in court, but would almost certainly be overturned as well. Same with the absurd "Born Alive" Act.
Society has never really been consulted.
This comment has been removed by the author.
Yikes-the blogger keeps losing my comments.
I forgot to add that I agree with you-if we are going to save these babies, we need to have better support systems in place.
ND - you are absolutely right. I never realized the magnitude of this problem until I had a disabled child of my own. I guess it is human nature not to care about these issues unless they affect you directly.
I agree that it would be nice if society would step up a bit more to help people with disabled family members; children are born with many disabilities unrelated to prematurity, and elderly family members are difficult to care for also. I am quite sure that will never happen (I live on the MS gulf coast, and I drive to New Orleans once a month . . .enough said).
However, even if by some act of divine reorganization, our society would magically re-form to give severely disabled children round the clock care, that doesn't negate the fact that these children suffer, and their families suffer. The healthcare system and the school system suffer (though not in the same way as the family).
I watched my son suffer for 7 years, not kind of sort of hurting a little bit but screaming until his eyes bugged out of his head, until he couldn't breathe, until he vomited. He banged his head against the floor or wall so hard it bled. He ate his feces and smeared it all over the wall, over his bed, down in the cracks betwee the pillows I'd placed to try to stop him from banging his head. His intestines wouldn't work, and the pain was constant and excruciating. He couldn't talk, he couldn't understand, he couldn't stop what was happening to him. Constant hospitalizations, banging his head against the steel crib they put him in, even the blood pressure cuff was agony for him. This is the life he spent 109 days in the NICU fighting for.
My suffering was nothing to his, and neither was the end of my career, the destruction of my marriage, the financial hole that we had to go into, or the difficulties that our other son had adjusting to and surviving this experience. I can't imagine any combination of villages that would have impacted this scenario very much.
You are in my brain.
I have been thinking a lot about the dichotomy of the political stances of some: those who are so firmly pro-life and yet continue to cut funding for programs to help the disabled and the families of the disabled. I don't understand how these people can't see the harm they are doing.
I just got done reading all your archives, and I have to say that your blog is really fascinating. The entries, the comments, everything. I appreciate that you present an ethical side to your profession a lot.
Anyway, if a village helped in raising these kids, it'd also have another positive outcome... more people would be used to those with disabilites and wouldn't point, stare, or be afraid to interact with those who are not like them. Sadly, though, I don't think that will ever happen, at least not in our lifetime.
I'm the parent of a child with severe disabilities, and when he was born,my first thoughts were that I didn't want him to have to suffer his entire life. I didn't even think about the caregiving required on my part, and I surely didn't realize what a commitment it would be, especially as he got older. I love this son with all my heart. He has had good days, has laughed and played and learned, made progress, then regressed. He has cried and screamed every night til past midnight for three long years until he was finally diagnosed with severe reflux. Everybody thought he was just "fighting sleep." He has bitten holes in his hand when he was in pain or when the vacuum cleaner runs.
He is long past his peak progress and peak health, and I really don't know what tommorrow holds. Of course, I never wanted to have to care for a severely disabled child, but the priority has always been what's best for him, not me. He was eligible for institutional care years ago, but I prefer to break my back and keep him home as long as possible. At least he has had a home and a family who loves him. He has gone to church, said the word "God" in Sunday School and known that he is treasured.
The thing is, the public really doesn't understand the impact of severe disability. They just assume the children are getting all the medical care they need, and the parents are automatically qualifying for respite care. They know they don't want to be in our shoes, yet they have no concept of the extent of its lifestyle change.
And about the Village: I went on a community outing Sat. with my wheelchair-bound child who is obviously also otherwise disabled.
There is a person in our town who is well known for her political activism. Her words aren't kind, and people either love her or hate her. Yet, as we walked along the street past upright pillars of the community, nobody paid attention to us -- EXCEPT this person of "ill repute." She saw us and came straight over, spoke to my son, asked him his name, gently touched his shoulder and gave him a hug. He smiled and laughed and thoroughly enjoyed meeting the town "sore spot." While I don't agree with her political tactics, I do have a new respect for her and realize that deep down, she must have a compassionate heart. Too bad the entire "village" can't be like the "sore spot."
The gulf between the disabled and the normal or neurotypical folk is as wide as the gulf between the rich and the poor.
The rich may be middle-class or upper middle-class. The poor may be the working poor, which covers their poverty from sight.
But there are two different lifestyles going on--one vastly different from the other.
If we had the village mentality, we would take notice of the needs of the others, on the other side of the gulf. Starting with some form of voluntarism. Brining a hot dish to a neighbor who has someone in the hospital, who has just had a baby . . . visiting an older neighbor and offering to buy some groceries or bring them a casserole.
The people at the bank ask me about my elderly mother, knowing how I built onto my house so she could have a handicap-accessible suite--and then ended up in a nursing home anyway. Just ASKING is wonderful and implies a willingness to be supportive. Today I am going 3 houses down to put a get-well card on my neighbor's door---her husband suffered a stroke while they were on vacation, and they got stuck in that city during his hospitalization. She should be back in town some time today. The fact that another neighbor told me about this is meaningful . . . Would that happen in YOUR neighborhood?
This "village" mentality can start out small and manageable. And then it can get bigger, if you are open to it.
Chris and Vic
ND - a very valid post, however, I disagee in that parents are more worried about having a severely disabled child than about the suffering the child would endure. Severe disability most often DOES include suffering, as you well know - and so do your parents. My first comment to the RN when I saw my daughter for the first time was, is she suffering? I was assured she was not. .false reassurance for sure, as she had just had a grade IV IVH and was having continuous seizures, and her kidneys had not yet begun functioning. .any adult experiencing the same would most likely be in excruciating pain. We asked for her to be taken off life support later that day with the blessing of the Catholic chaplain.
Her neonatologist refused.
Suffering? OMG - she has suffered more than 10 people in their lifetimes. Every time she goes into yet another surgery, I pray that something goes wrong and that she will be released from this. My best friend's preemie daughter died mercifully at age 12 from repeated shunt problems - this was 7 years ago. To this day, she said she has not grieved her daughter's death, but is haunted by daughter's LIFE.
I also question the idea that parents are less concerned with their childrens disability than their suffering. As a long time moderator of a very large support group for preemie parents, I would definitely say that the caregiving, effort, expense and personal pain and suffering on the part of the parents is the *least* significant element of the equation at the point of resusciation (IF consultation is even given to the parents on the point) and also in the child's early years. The parents are traumatized by the suffering their children are enduring (and often feel duped that any agreement they had in the matter was based on glossed over assessments of what their fetus was about to experience). As for the village - being from a 'Blue State' known for its love of the Utopian village "summer of love" sort of sound bites - I can tell you that no society hates the disable and disadvantaged as much as ours does. We put on a game face of acceptance, and support - but the families who are attempting to live with a child (or children) whose day to day needs far exceed a neurotypical child will tell you that they are - very, very much alone. It's not just the caregiving - it's basic services that every American takes for granted like a free and adequate public education. There was a blog entry on another site about the "John Q" story and the authors point was that it was fiction because there are programs that provide all the necessary medical care for children whose parents cannot afford it. I am sure that the author actually believes that - because he needs to in order to continue to save these desperately damaged children. But a short time membership in a group for premature children will tell you the sad fact that it is a fantasy. The long term care of these children bankrupt and destroy all but the most solid marriages and affluent families. The squeeze on the middle class in society is nothing compared to the squeeze on the middle class in preemie-land. Unless you are in the top 25 percent of wage earners, the worst thing you can do for your preemie and any other children you may have is to have a job and private insurance. You will not be able to afford the uninsured cost of the care for your child(denied by your private insurance) - but the government can't/won't help because you *do* have insurance and down the rabbit hole of frustration, fear, pain, isolation and desperation the family slides. The idea that this will change some day is intoxicating - but if it happens at all, it will certainly not benefit the hundreds of thousands of already "saved" preemies. One of my favorite preemie Dad's loves to refer to this condition as Tortured to Life - as a twist on the "tortured to death" - the first time I read that I winced - but as time and the tears of thousands of parents have scrolled across my computer screen - I have to give him his kudos for accurate English language portrayal of the situation.
Sheila Brown
Los Angeles, CA
Crickey.What an issue to raise ND.
Can we really say that in Westernised society a village can raise a child will ever be true? Thatcher, when she was Prime Minister, the mad old cat, said there was no such thing as Society. Despise her as I do - I have to wonder, very sadly, if she is right.
I wonder what people are afraid of? Life can be hard and surely we are defined not by how we are when life is shiny and happy, but how we 'are'when the chips are down. How we help those less able and capable. How we look after those who cannot look after themselves.
DOn't tell me " I couldn't do what you do"..what the heck would they do then?
As parents, when we step outside that " good parent" box that we have mentioned before, it is normally becasue we are tired, frightened, anxious, angry etc. We will have asked nicely for help. And been ignored. We would have asked again, and have been told we should have been grateful.
ND - you know the rest.
In the same way that you can spot a child born prem, you surely can spot the parents of chronically ill children. We are tired beyond our years, more wise then we would ever wish to be,we have no money ( it has all gone on therapies), the mothers have no jobs (we are looking after our children), the mothers have no finanical independence, parents have no savings, no pension plans, no new shiny cars or good holidays.
WHen my son was home from hospital - on oxygen, apnoea, ng, etc, ..I got 4 hours a month respite. It's not only farcical, it donwnright bloody dangerous. I have yet to find a dr or nurse tell me how I can have a shower and wash my hair whilst my baby is on oxygen. Seriously..imagine how that would play out " so, while you were washing your hair..your only baby , who was on oxygen was left unattended and turned blue. And you did nothing ..is that right?". And yet..and yet.. a shower a day, it isn't asking too much is it, just 20 mins out of 24 hours to have some time?
What villager will come in to watch a baby should they go blue? What villager will wipe down everything after they have vomited again..everywhere. And then do it all again two hours later? This list is bigger than you know of 'crap things we do in the name of love'.
As a parent group, we can appear harsh, angry and frustrated. It's because we are tired of picking up the pieces of society's fascination with neonatology. It really isn't personal.
I can' t even begin to start on how much these children suffer and how much we suffer watching them. Honestly, I can't.
I am glad you are raising these dilmmas. I am honestly. There are some bloody huge ethical issues that are raised by neonatology.
In the interest of full disclosure:
For Lori--you needed a heads-up at 20 weeks gestation, in your OBs office, about "if you baby is born in the next few weeks, here is how it will be". You probably didn't get that. If you had, you would have known a bit more about your options and the aftermath of each option.
Sheila's points about parents with kids still in the NICU or kids in their early infancy . . . Call their attention to how tolerable it is to do EVERYTHING for an infant--any parents expects to do this. But a parent of preemie may look forward to doing everything for their child for a lot longer--the child's motor skills, walking, feeding will not progress according to the timeline we expect from an ordinary baby. You will be feeding (with great difficulty) a lot longer; your child may not creep, crawl or walk on-time. You are carrying him, providing for his safety as a non-walker. Your child may not communicate with sounds and first-words for a prolonged period---leading to great frustration on the part of the child and the family and other caregivers.
Your child may not see (as well) or hear (as well). Appointments with specialists begin here.
You may be giving meds, dealing with oxygen and monitors. You needed to take CPR before your child even left the NICU.
You need to teach others who care for your child about these "extras"--WAIT, the local daycare will NOT take care of a child who needs the extras! (Your life is getting more complex, right?) You are missing more work than anybody else in your company/department. Oh-oh! Job in jeopardy?
Your child is constipated and screaming. Sleep? Less is NOT more in this case. Now you are crying because your child is in distress.
You and your child's father are not on the same page--You are anxious and teary and scared and sleep-deprived, and begin to think about the future. Your husband still has a perfect attendance record at work and isn't losing as much sleep as you. Double oh-oh.
If your child has missed one or more developmental milestones, there is no way to describe your shift in viewpoint. Yes, you are willing to do for your child; and you are all-out bonded and uber-protective of your child; AND . . . there is this gnawing fear and grief and possibly anger growing under your breast. And it takes its toll.
And if, on top of this, your child is suffering in any way . . .
And you discover, further, that no one believes your worries are legit, and no one (peds, follow-up clinics, early childhood pgm) offers any help. Or, the help they offer is too little, too late (after a huge fight to get help), or it is too piece-meal, and you have to go to many specialists and programs to put the pieces together for your child. You ask yourself: Am I covering all the bases? Is there something else that I should tend to, look for? Is there another shoe to drop?
Out-of-pocket equipment and therapies. Changing doctors. Finding caregivers. Negotiating with your boss, your partner, your other kids. Deciding whether you can have any other children, given the complexity of this child.
Someone said you don't know all this at the time of the resuscitation decision. True. But you need to get a heads up, first from your OB at 20 weeks; then, little by little, info by neos and other team members at care conferences in the NICU. Maybe you would be lucky enough to talk to another mom of an ex-preemie, available to you through your NICU or in your community. These lists on the internet have enabled me to get smart and smarter, and not be buffeted by all the issues. And keep things together for my kiddo.
It is incredibly complex. In my area, the WAPC (Wisconsin Association for Perinatal Care) put together a binder for NICU parents to help anticipate some of these issues. In an introduction to the binder, parents are told that they must become the care coordinators---case managers, in nursing and social work ling. It is true. You must become and stay hyper-vigilant about your child. There are many issues and services that must be coordinated. And YOU are IT--the coordinator/manager. (No village behind you--it is you-alone.)
Brenda and Terri and Dream Mom tell us about the later stages with kids with extreme disability. We need to listen and be prepared, if this is what our futures will be. (Set up a reliable circle, even one or two others, who care about your child and will participate in his life and care . . . if you can.)
Chris and Vic
"So if society wants us to resuscitate babies even when they have a significant risk of having impairments - and if you look at the Baby Doe rules or the Born Alive act, society does seem to want us to do so - then society should ante up and make it easier for families with such children."
Please do not believe for a moment that SOCIETY had anything to do with the passage of the BD rules or the BA act. These are mainly an extension of the anti-abortion rhetoric that were passed largely without public say. Much the same way the current republican administrations has 'slipped' further and further erosion to civil rights into current legislation. And if your readers are not aware, the Baby Doe laws were passed during the Reagan Administration, the previous 'long term' republican administration.
Our society has always been about 'survival of the fittest'. It is so engrained in our psyche that we push aside those that are not pushing to the front of the pack.
You see this everywhere - starting with the cold war even! The US government did all it could to 'be the best' - from the Olympics to the space race. Americans think so highly of themselves they are willing to pressure (and even invade!) other countries into following their ideals. This attitude runs rampant across the united states - especially in the 'red states', and it sounds like you and I live in 'blue states'. Americans are better than others, just ask 'em.
It would take generations to change that mentality and in that time there would have to be no war, no competition, no 'anything to do with 'beating' some other country'.
Its not going to happen, so this attitude will last. The 'Village' mentality is a dream, a political 'ploy' to draw in people like you to the dream of a better, more compassionate society. It ain't gonna happen.
People are not going to stop for more than a moment and lend a hand. Personally, I doubt, if I wasn't already in that boat, that I would offer a hand either; I have been 'bred' into a society that does not value imperfection.
In the meantime people, like you, who have this amazing authority to dictate the future of this country, the future of a family, the future of a human being, need to take a good look at the responsability that comes with that - and not let it provoke a greater sense of self.
If you knew that the 24 weeker you were saving was to go home with you and live out the rest of its life (a life spent in discomfort and pain) under your care and expense, would you treat them differently?
I think if you really thought long and hard about that consequence many of your blog posts would have a different tone.
You know, as a mom in a two-income, small nuclear family that did everything in the "right" order (college, career, marriage, house, THEN children), I'm ostensibly the poster child for the "It takes a family" POV rather than Hillary's.
But you know what? Even with my single, developmentally advanced daughter, and our relatively comfortable financial status, it's STILL taking a village. My parents live five minutes away, and take the baby for a few hours at a time so I can stay caught up on housework. My sister does childcare (paid) while I'm at work. My in-laws send generous checks to help us fix up our fixer-upper. We go to free story hours at the library, free concerts put on by a local children's music ensemble, walks in well-kept village green areas. We watch no television other than some children's programming on PBS. We rely on the expertise provided by our family practitioner. I'm not relying on others to do the nitty-gritty of raising my child, but it would be foolish to suggest that the nuclear family could raise a child with NO outside help or influence.
It's unfortunate that here in the US, the prevailing cultural mores have led to the situation that Chris has to live with. Those who promote the viewpoint that's led to this situation are deluding themselves-- they have that luxury, since they are often those who can afford to pay someone else to do everything they don't have the time to do. If we truly want to promote GWB's "culture of life" (lip service to the political right if I ever heard it), we should be valuing the lives of our weakest-- which include preemies born at a very young gestational age, throughout their lives.
Throughout this discussion there have been references to "our society" and to "our culture."
The implication is that some other cultures or societies actually go to great medical effort to save marginally viable infants and then provide high quality life-long care for the severely ill and disabled survivors.
Can anyone provide examples of such cultures or societies?
Do these other cultures have NICUs?
Wow. thanks for all the comments. Let me address two points.
First, the bit about whether parents care about the suffering of their kids. Of course they do. See my post of February 13 entitled "Outcomes II", where I acknowledged that. But in yesterday's post I'm talking about parents who are first confronting the issues of extreme prematurity, who in the labor and delivery room are trying to make decisions. I don't think those parents understand what their child's suffering would be like, and I think it's hard to get them to understand it. So I think at that point in time, the concern is more about how it would affect them to have a disabled child, rather than the child's suffering.
As for the comments that "society" doesn't support the Baby Doe laws and Born Alive act: Who elected the officials who made those rules? A majority of people elected them, not a minority. Obviously, society doesn't speak with just one voice, but let's not pretend that only a few people want the Baby Doe rules and Born Alive act.
Also - I agree, I don't know of any society or culture that supports the disabled any better than ours - and that's too bad.
I DO believe that only a few wanted the Baby Doe Laws and Born Alive act. .the same people who were screaming at the door of the hospice center of Terri Schaivo. .this does not represent the majority in any way shape or form. Most pro-life people I've spoken with do not agree with the Baby Doe laws. The Baby Doe laws, especially were pushed through at lightening speed before anyone knew what hit them.
During the "debate" period before the passage of the Baby Doe Regsin the 1980s, I sent letters to many congressmen and senators telling them what this would mean in terms of infant suffering.
I quoted passages from "The Long Dying of Baby Andrew" and from the case history of Brian West, a baby born with the same problems as Baby Doe who was treated aggressively and disastrously.
Some of the legislators wrote me back to assure me that the sort of treatment given Baby Andrew or Brian West was *not* what they had in mind.
However, this is exactly what happened.
Ethicist Arthur Caplan has described the results of the Baby Doe regs and laws this way:
"Ironically, the major outcome ...seems to be that some infants who are born extremely premature wind up getting full-press, aggressive intervention with less choice being given to their parents. Experimentation and innovation in neonatology have flourished with respect to premature infants."
As for our "elected" officials: There is controversy about whether the American people ever actually chose George Bush.
Whenever the American people are asked specifically about the actions seemingly mandated by Baby Doe or Born Alive, they have overwhemingly opposed it.
As for the suffering of my baby -- speaking only for myself, I can say it was *the* consideration for me -- even on the delivery table. Still is.
ND, I hope that you will write a piece about the suffering of the children.
In the very youngest of the preemies in the NICU, what does suffering look like? What procedures cause the kids keen suffering? What did we do 5 or 10 years ago, and what do we do now to address their pain?
Does being on a vent cause suffering? In what ways? To what degree? And how do we support the suffering infant on a vent?
What about air hunger? Painful procedures? Pain meds?
What about neurologically-based irritability vs. pain? How can you distinguish between the two?
Chris and Vic
I have posted before about how my 25 weeker is all caught up. I had stopped thinking of her as a preemie, but then yesterday she saw a man in full MD scrubs at the bookstore. She ran to me, clung, and started to almost cry. Now I know she suffered. I'm still ok with that (she's alive because of it), but it broke my heart.
I haven't read all of the comments however I would be interested in having a better understanding of suffering including specifically, how you determine that they are suffering.
Helen- your comment about other cultures made me think of some of my experiences overseas. A couple of years ago I went and volunteered at a children's hospital in Nepal. The suffering there was great- no pain meds for the burn patients, limited treatments for some common (and easily fixable) childhood illnesses/deformities. That was all heartbreaking.
But proportionally, I would say that I see just as much suffering working as a nurse in PICUs/NICUs here in the states. Many of these micropreemies suffer greatly with what we put them through every day in the hospital, and that alone would be enough to convince me to not resuscitate a micropreemie if I were forced to make a decision about my own child. Perhaps I have an overly biased perspective, but I see too much every night I work. It's especially sad to me when a 6 month old dies after 6 months in the hospital (never been home- many of these rarely have even ever been held by their parents) after having had a life filled with nothing but painful procedures, surgeries, exams, IVs, blood draws, etc, etc. It's not just preemies- this also happens many many times to babies with very complex heart defects, complicated genetic syndromes, etc. We constantly push the envelope to try to get these babies to survive- when the truth is, some of them should be let go much earlier in the course of things. Just as many old people wish to die with dignity, these babies deserve that too. Other cultures seem to accept this more readily than we do in the states.
Now I am talking about complex cases here- please no one misunderstand me as saying that I think we shouldn't help babies with heart defects or not resusitate any preemies. There are just limits; where these should be drawn, of course that is the crux of the matter...
I have been unable to post comments because of an error with the word verification system in blogger. I'm finally able to get a word in but I fear it's a little late in the game. Every one's comments have been so educational and heartfelt.
neonataldoc wrote: "But in yesterday's post I'm talking about parents who are first confronting the issues of extreme prematurity, who in the labor and delivery room are trying to make decisions. I don't think those parents understand what their child's suffering would be like, and I think it's hard to get them to understand it. So I think at that point in time, the concern is more about how it would affect them to have a disabled child, rather than the child's suffering. "
Being COMPLETELY honest here...
I was one of those parents that ND is referring to. When my water broke, at 23.0 weeks, we were visited by a neonatologist. He informed me that, if my daughter was born before 26 weeks, she would most likely have cerebral palsy, blindness, etc. He told us that we could hold her and let her die (this was in 1998-before Born Alive Protection Act). I did not appreciate his honesty. I was so incredibly angry. I had this vision of what our life would look like with a little girl in a wheel chair. I felt we could handle it.
I never once considered the suffering of my child. Never once. I still feel guilty about this, to this very day.
My daughter suffers. A lot. But, she only has mild CP. It is the many hidden issues related to prematurity that affect her most. (the list is too long-please visit my blog if you want to read them).
Why didn't I think of my daughter's suffering? Because I was never exposed to anything remotely like I was experiencing at the time.
Never did I hear about preemies, other than miracle stories.
Never did I hear about the reality from other preemie parents, even ones that were in my own family. No one spoke of how hard it was, never.
Never did I read about lives of preemies.
When I was pregnant with my son, I ONLY thought of him and his potential suffering. That is why I was adamant about making sure everyone knew what my wishes were for resuscitation based on gestational age at birth.
As far as the impact on the family, it runs so deep. My husband and I have been married for almost 13 years. Just the other day I commented to him about how he is so angry all of the time and how he never used to be this way. He gets worked up about every little thing. When I asked him why, he said, "I've been beat down for 8 1/2 years. "
My heart aches for him and for our marriage too.
I don't think those parents understand what their child's suffering would be like, and I think it's hard to get them to understand it. So I think at that point in time, the concern is more about how it would affect them to have a disabled child, rather than the child's suffering.
ND - I think I'm misunderstanding you here, but how I read this is that you feel that parents would not be able to imagine or understand the suffering of a person (fetus or adult) in an intensive care unit, being forced to life by extraordinary means ?? Are we talking about third world jungle dwellers who've never seen a modern hospital or are we talking about First World parents who absolutely, positively would have some reference for this level of suffering ? I think we can probably agree that MOST Americans would not wish to be in a situation where they were forced to endure any amount of medical intervention that was prescribed for them by the medical establishment with their consent - otherwise there would be states where this forced treatment would be acceptable. The only exception to the informed consent methodology is with these "so called rescued" fetuses. Their language disability precludes them from declining their treatment, and yet - even their typically understood advocates are not allowed to act on their behalf in this scenario. I don't think parents are unclear on the suffering their children are being exposed to. But, my other point of misunderstanding is that it seems you were saying that if the reason the parents were declining aggressive, painful, experimental treatment of an otherwise non-viable fetus is that they did not want the responsiblity for the disasterous life that would result is somehow a "wrong" basis for that decision ??? I'm assuming that I misunderstood your note because if there was ever a GOOD justification for that decision it would be the parents assessment of whether or not they could handle the situation and whether or not they would want to 'give' their own child a life sentence of pain, loneliness, isolation, and poverty. I can't actually conceive of any parent who would say - oh yes please ... let that be my childs future - who wants summer camp, friends, activities, school, college, marriage and enjoyable careers.
Right ? I think parents use a variety of factors to make decisions in the delivery room and in the NICU - and I DESPERATELY want to believe that burden and quality of life factor in at the top of the chart.
Sheila Brown
Los Angeles, CA
Amen, Sheila. Parents should not be demonized for declining tx based on concern over quality of life.
I wrote: "I had this vision of what our life would look like with a little girl in a wheel chair. I felt we could handle it.
I never once considered the suffering of my child. Never once. I still feel guilty about this, to this very day."
I wanted to add something to my previous comment...
Although I never considered my daughter's suffering, it wasn't because I didn't care. It was completely because I didn't *know* she would suffer. The neo put it to us in a way that suggested we should not save her because we (hubby and I) wouldn't have the same life. (he sure was right on that front also)
When did I start to think about her suffering? The very first moment I saw her in the NICU! Every single procedure they were doing was without pain meds. It was very obvious that she was in pain.
There has not been one single day, in her 8 years, that I can honestly think of where she has not had some sort of physical or mental pain/discomfort.
To Dream Mom who said:
"I haven't read all of the comments however I would be interested in having a better understanding of suffering including specifically, how you determine that they are suffering."
Preemies and other newborns feel pain just as acutely as we do and for the same reasons, in fact the evidence suggests preemies feel pain even *more* acutely than older individuals.
As long as babies are not paralyzed with curare-type drugs to keep them from "fighting" the ventilator, babies' behavior is usually *highly* suggestive of pain and suffering.
(The curare-type drugs used to paralyze preemies for treatment do nothing to alleviate pain, they just render the baby unable to respond to it.)
Some babies are (or become) too weak to show signs of pain but their hormonal responses to pain can still be measured.
Until the late 1980s/early 1990s it was not generally acknowledged by neonatologists or pediatric surgeons that newborns even felt pain.
Heart surgery, brain surgery, intestinal surgery was performed without any pain relief whatsoever. Some babies died from the stress of surgical pain and the chronic pain of their many conditions and procedures.
In the mid 1980s, I joined with Jill Lawson and Ronnie Londner (two other mothers who realized their children had undegone major surgery without anesthesia)to make this fact public.
In a matter of months, the New England Journal of Medicine rushed into print a previously ignored study by Dr. "Sunny" Anand showing that anesthesia greatly improves the outcomes of ductus surgery in preemies.
And, although much remains to be done in this area, neonatologists (at least some of them) have begun to take infant pain seriously.
But back to "Baby Doe." When this issue was first being debated, I sent two examples of infant suffering out to varous congressmen. Here are the examples I gave:
(1) Andrew Stinson
Born at 24 weeks gestation in the early 1980s, Andrew Stinson was treated over his parents' objections. He was placed on a respirator where he remained for the rest of his life, suffering from the side effects of his life-saving treatment.
He developed severe bronchopulmonary dysplasia, pulmonary hypertension, pulmonary hemorrhage, retinopathy, heart problems, stress ulcers, and gangrene that necessitated the removal of his right leg muscle down to the bone.
He developed rickets and his bones began to break. One of Andrew's doctors remarked that the only time he had seen so many fractures was in an Air Force crash victim.
Another physician commented that one reason Andrew needed the respirator was that with all his broken ribs "it hurts like hell every time he takes a breath."
Andrew also suffered from severe failure to thrive, enlarged ventricles, brain atrophy, and seizures.
Andrew's parents begged the neonatologists to remove him from the respirator and permit him to die a natural death. Their request was characterized as "immoral" by the attending physician, who threatened the Stinsons with legal action.
Five months after his birth Andrew managed to extubate himself, and, having done so by his own hands, he was allowed by the staff to die.
The Stinsons and their physicians outside the NICU believe that decision making in Andrew's case was greatly influenced by the fundamentalist religious beliefs of physicians powerful in the NICU and in the hospital.
The Stinsons also noted that research interest in Andrew was high. A consulting physician wrote on his chart: "The incidence of rickets here and in other units is very interesting and points out the need for data...the endocrine section would be interested in exploring this area."
Andrew's father commented that at many thousands of dollars per month, Andrew's care was a "handsomely funded research effort."
(2) Brian West
As the original 1982 Baby Doe case unfolded (concerning the infant in Bloomington, Indiana, with Down syndrome, esophageal atresia, and a heart defect), a similar child, Brian West, who had been "saved" against his parents wishes, was dying a slow and agonizing death in medical custody.
John and Susan West, parents of Brian, were in supportive contact with the parents of the Indiana Baby Doe throughout their ordeal.
The Wests also spoke out in behalf of Baby Doe's parents on "60 Minutes," and in numerous letters to editors and supporters of the "Baby Doe" regulations.
Here is an excerpt from John West's letter to columnist George Will, a Baby Doe regulation supporter:
"Brian was born...with the very same defects as the original Baby Doe... After listening to the doctors describe what they could try to do for him, we made the same decision as the Bloomington family -- 'do not treat our son, the life he would be given would be too marginal an existence, it is better for him that he die.' Our decision was firmly supported by our friends (of all religious backgrounds -- Protestant, Catholic, and Jewish), as well as by our families and pastors. The choice was based on love and on the 'Golden Rule.' Neither my wife nor I would want to be kept alive if we had been in Brian's place."
Surgical reconstruction of the esophagus, the Wests were told, is possible, but the procedure has a high failure rate, especially in infants with additional abnormalities. Even a "successful" repair never restores normal swallowing ability, and the multiple procedures required to keep it open involve serious risks and highly painful side effects.
When the Wests refused to consent to the reconstructive surgery, Brian's physicians obtained a court order, had him removed from his parents' custody, and treated over the parents' objections.
Despite five operations, Brian's new esophagus never worked. Scar tissue kept forming, requiring frequent dilation. Brian was fed through a gastrostomy tube but was never adequately nourished. At age 2 he weighed only 14 pounds.
Stomach acid backed up painfully into his new esophagus and oozed constantly from a surgical opening in his neck, burning his skin.
During their frequent visits to Brian, his parents almost always found him screaming in pain. For nearly a year Brian was tied down to his crib to keep him from pulling at his surgical wounds, which never properly healed.
Meanwhile, he was constantly ill, his veins collapsed, his heart failed. The medical team characterized Brian's suffering as "not unusual" in such cases.
At 26 months of age, Brian went into respiratory shock, with intestinal bleeding, kidney failure, and sepsis. He suffered severe brain damage that left him blind and possibly deaf.
Whenever he was awake, he was agitated and writhing in his bed.
Brian's doctors talked of confining him to a state hospital where he would be maintained for life on predigested amino acids constantly infused into his intestines.
A month later, despite the doctors' best efforts, Brian managed to die.
Brian's parents believe this was a case of defensive medicine, that the physicians were primarily motivated by a fear of bad publicity such as that which later occurred in the Baby Doe case.
"On the whole," said Susan West, "the doctors seemed unenthusiastic about treating Brian, with the possible exception of the pediatric surgeon who remarked that operating on a baby like Brian was a 'once -in-a-lifetime opportunity.'"
****
I think it is safe to say that these babies suffered and that their suffering was recognizable.
The Baby Doe regulations and laws are supposed to prevent "child abuse" by parents who do not want aggressive treatment for their critically ill newborns.
I have to ask, however, who are the real abusers here?
In addition to Sheila's rational explanations, there is instinct at work. A pregnant woman close to delivery is obsessed with seeing and holding and protecting her child. The rational stuff may have to compete with her instincts.
What are we really afraid of?
I thought I knew, till I spun out some years ago, on the ice. In the seconds that elapsed till I ended in the median strip, I finally knew that I was afraid of PAIN, not death. But I DON'T know if everyone is the same as me.
I think we are also afraid of people with disabilities and cannot imagine living with them in close proximity. It is painful enough to meet them casually, on the street . . . So, the father who said to the neonatologist who was aggressively resuscitating his infant, "If he's gonna be messed up, you can stop right now" might have been saying "I cannot carry that kind of burden" or "I have no idea how to relate to someone with disabilities". Or maybe he was saying something else altogether--we'll never know.
Suffering is the great unknown for me. That is why I asked Neonatal Doc to say more . . . I see my son so distressed by loud noises. I see him act as if he is having a panic attack when the train whistle blows; or when the fire truck sounds its air horn during a parade. Heretofore he has not been able to answer the question, "Does something hurt?" Like a baby, I have to count on reading his cues.
With respect to cues, I heard an animal expert say, just today on Talk of the Nation, that the pacing, the stereotypic behaviors that animals do in zoos, shows that they are in great distress . . . Does that mean that my son's stereotypic behaviors may perchance be indicative of stress, or follow from some early stress as an infant?
The irritability of kids on steroids; the irritability of kids withdrawing from Methadone (or Fentanyl?); the crankiness of the big-eyed , wiry IUGR kid--are they as starved as they seem? . . .
These are all questions that I have about kids' suffering.
Heelsticks are obvious. Fighting the vent (and then giving up) is easy to see and imagine. Fear, panic, sudden moves (from out of a deep sleep), sudden temperature changes, light, noise . . . I think we should try to imagine what impact these have---no, I mean put ourselves in the place of the child as best we can.
chris and Vic
I chose not to bring my severely disabled baby boy into this world, not knowing how badly disabled he would be, we decided it was a chance we couldn't take.
We made our decision with our two other children in mind, we were told of all the different problems disabled children can have, problems that we never even knew existed!!
We chose to let Mathew go at 23 weeks, for my other children, for us, and to save him from a life of suffering, we have guilt but no regrets.
We were also told and knew from experience that we would have to fight for every bit of help and support that we could get, and his care would take over our lives.
We are in the UK and I was amazed at how some of the parents of disabled children here, have to keep trying to get even the minimum of help, whether it be support or financial.
But it wasn't the baby\young child years I worried about, it was the young adult and onwards years, and what happens when we got old, that responsibility would fall onto his siblings, who would probably have families of their own to care for.
A village where everyone was in the same boat and looked out for each other sounds lovely, I have alot of family around me and I know they would have helped.
It does sound like a lovely place, but it would never happen, you always get the givers and takers in life, and the same few would of course be giving the most, and others would do nothing.
Sorry I'm waffling a bit, just feel like getting it off my chest - sorry!!!
To anonymous above: I'm pleased to hear that you were so well-informed about the possibilities for your child's future and were able to make a choice. Here in the U.S. we've seen many instances where this is not the case. I believe that neonatologists and others, including NICU nurses who want to work in the NICU should be required to spend a significant amount of time either living with a family of a severely disabled survivor, or volunteering for significant respite care or teachers' aides in special education classrooms so they really get a glimpse into what happens to these kiddos down the road. It would sensitize and educate many to the vast hole of non-support that currently exists and how parents indeed DO have to fight for every little thing for their child. That in itself is exhasuting, and I've seen a good number of parents simply give up - it's too much.
In addition, the fact that you were able to MAKE a decision is exactly what should be happening below 25 weeks. Guilt? I'm certain you have this, but I hope the balance of knowing you did the correct thing not only for yourselves and your children, but most likely for this child who would have gone through unbearable suffering in the NICU and THEN faced more during his lifetime with repeated surgeries, etc to try and keep the "house of cards" upright.
Thank you for sharing your story.
You have have given me alot of think about and I have at this point no clear answer, I guess from my point of view I guess I would error on the side that all babies at any stage need to be resuscit a te d
I am looking for a support group for people who underwent surgery without anesthesia as infants. I know a couple of people who were put through this (and no doubt there are millions more) who are just now, after decades, suffering from memories of the acute trauma and suffering severe depression and axiety in medical settings. As important is it is to fight for infants currently being abused by the medical establishment I would really like to see some help for victims from the past. I suspect there are many who suffer symptoms and don't even realize the source. If anyone knows of an on-line support group or other resources for adult sufferers of infant surgery or treatment without anesthesia I would much appreciate hearing about it.
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