NICU Nurses are Baby Killers?
Posted by realityrounds on September 17, 2009
I wrote a controversial post about resuscitating infants at the edge of viability……and now, I am paying the price for it. Being a NICU nurse is hard. You could probably tell from many of my posts that caring for infants, especially those with unknown outcomes and prognoses, can be an ethically and emotionally draining experience.
I love my job. I love saving the lives of neonates. I love the skill it takes to care for the most critical of patients. I love being a part of groundbreaking treatments that impact the lives of infants. I love nurturing the tiniest of human lives to slowly grow and blossom and thrive due to my expert care and touch.
Yet to those who do not know, who can not possibly understand, I am nothing but a baby killer.
Because I, with my many years of experience caring for the extremely premature, do not believe that extraordinary measures should be taken to resuscitate infant’s below 23 weeks gestation, I am labeled a heartless baby killer by the anonymous punditry of the internet bloggers.
It is disheartening to think that there are people out there who believe NICU nurses ,who do not advocate that every premature baby be resuscitated no matter the gestational age, are inhumane, insensitive bureaucrats who only think about the reimbursement of a bed space.
For us NICU nurses on the ground, this is a disgusting load of crap to have to hear. Below are some comments left on various blogs and threads regarding my post and how I felt about resuscitating infants at the edge of viability:
“Perhaps we should ask the opinions of some people who were once babies who were preemies and survived and see what they think about the whole business.
I have a feeling they will tell you they don’t remember a thing. And if they do, I am willing to bet they are glad they went through it.
It is all a ploy. Playing on peoples’ fears of pain and suffering to, as Scrooge said, “decrease the surplus population.
I am scared for the future.”
“It sounds to me as if some of you are looking for an excuse not to spend the time, effort and expense on children who “probably won’t make it anyway”. I don’t believe it’s about compassion at all. I think it’s about inconvenience and money.”
“This is just disgusting….he was moving, breathing, and those little bastard doctors did nothing? They should all go to prison for murder and assault on the mom!”
“Some, no, MOST families want to try, and YES we know preemies need a lot of care, at first. So, you and the NICU nurse say set them aside and let them die. Cruel and unethical?Sorry but your extravagant links show the exception and NOT the rule. YOU are cruel and unethical to deny care to these little ones.”
“Sorry it means more work for the doctors and nurses but this is Life at its most innocent and helpless and deserves a chance. We defib flat liners over and over, we try and save life, not set it aside to wither away and die.”
I have dedicated my life’s work to the care of infants. I have invested blood, sweat and tears in the care of infants, including those at the limits of viability. I , like all NICU nurses, have real, hands-on experience of caring for these micro-preemies. We know what caring for these babies entails, and what the outcomes will most likely be. We deserve a voice.
Because the majority of NICU nurses do not agree with the concept of resuscitating any infant born alive, no matter what the gestational age, this does not make us heartless baby killers. It makes us realists. It makes us compassionate. It makes us heroes.
RR
Dou-la-la said
Whoa, I am utterly flabbergasted at those quoted statements! Please, PLEASE do not internalize what these people have to say. Their statements first and foremost reveal their lack of reading comprehension, straight up. Clearly they have no grasp on what you were actually saying in your excellent previous post (which I did read, I just didn’t follow the comments). What WOULD be the cutoff point for them? I hate to be morbid or sound like I’m being flip about it, because I don’t take it lightly, but seriously, where would THEY draw the line, then? 22 weeks? 20? 18?
Please, again, don’t take this to heart. They just completely missed your points. To be more sympathetic, many of them are probably speaking from an emotional place, probably an unhealed personal one. Just remember that for every one of these naysayers, you KNOW you have been a godsend for hundreds of other actual patients and their families.
Allison said
Amen. I am also in the more adult/geriatric end of things, but it is amazing that people speak as if money and not humane care is the issue here. The wider public likes to equate “care” with aggressive intervention, even when the interventions are extremely traumatic to the patient and futile. Why would we wish this on someone we loved? How many babies must experience needless pain (and fear) and still not survive in order to give a chance to one “miracle child” at this gestation.
Jen said
I agree completely. Sometimes the best thing to do is to provide the best end of life care possible and give the ’survivors’ (those left behind) support and counseling during/afterwards.
Jamie said
I think you guys do the best that you can. Don’t mind those people.
nishkanu said
Your post was thoughtful, reflective, and informed. Unfortunately, many people are not and don’t think past their own prejudices when they read something and then spew out a response. And on the internet it’s OK to be a jerk. Tune those suckers out!
pinky said
RR remember not everyone is 1) knowledgeable or even smart enough to understand what you are talking about 2) Some folks are a$$holes. 3) When you speak your opinion, you will get opposition. Many folks have told me I must be a terrible nurse because I think X, Y, or Z. They are probably not medical folks and have no clue. So F-them. Don’t let the man get you down.
atyourcervix said
RR — It comes across CLEARLY to me that you are a very compassionate, caring nurse. Do not let under-educated opinions of people who do not comprehend the difficulties and impossibilities of certain situations get to you. I may not work in the NICU, but on the L&D aspect, I see the physical and physiological impossibility of resuscitation on pre-viable neonates (before 24 weeks).
A 21 week neonate was moving and breathing? Hardly. They don’t have the lung tissue to do it yet. Nor do they have the muscle development to move. I have been there for several preterm births. These babies do not move. They barely breathe. Their eyes are fused.
True compassion is wrapping them up in warm blankets, and giving them to their parents to hold, while they pass on, quietly and comfortably.
Keep up the good work RR. <3
R. May said
And none of those people have ever seen a micro-preemie let alone cared for one.
They have no concept of the pain it causes the infant and think that with a little extra care 5 years from now they’ll be a happy normal healthy child or maybe just have a few disabilities.
As a mother I get it – it’s your child. But as a mother I would never put my child through that.
Catch 22 of medicine – just because the ability is there doesn’t mean it sould be done.
Everyone should be so lucky to have a nurse like you when they need one.
Ladydilee said
I have to say that my husband, had he posted, would have been one of the nay-sayers who thinks anything should be done to save the baby. His position is that of an emotional response, however, and I don’t think he truly understands the trauma involved in caring for these very fragile babies. In his mind, and probably in the mind of many of the commenters, all life is sacred, and every baby should be given the chance to have a life, even in that life is very limited. I don’t think he has ever encountered a situation where just because you *can* do something, doesn’t mean you should.
Your previous post sparked a very deep and emotional conversation between us regarding what we would do and how far we would go to save a baby at that stage, because we do have very different opinions. I can barely read through your descriptions of “care” for some of these micro-premies, let alone imagine living through it myself as a mother. Being 27 weeks pregnant right now, it is a very difficult discussion for us, and the “what ifs” are too varied for us to really come to an informed agreement. Let’s just say I am now counting weeks along as a continued blessing that we are further away from having to confront that possibility – with this child, at least.
I am thankful for your skills, and I can’t imagine going through what you do everyday and coming out whole on the other side. I am glad that you and every other NICU nurse out there decided to perfect the skills you describe, in case I ever have need to call on them. I also think that the ethical debate about what should or should not be done at the edge of viability should be left to those who face that delima everyday, who ask, “Is using this skill, in this case, right?” Because it is necessary, not for cost, or bed space, or any of the other reasons, but because it is humane and just.
Just because you can do something, doesn’t mean you should.
Jill said
Oh geez. :facepalm: Yes, people get into the NICU circuit because they want to kill babies. Of course!
It’s depressingly obvious that every single one of those commenters did not even read your post…and if they did, they skimmed it for buzz words that they could blather about. It’s a very common formula amongst the “punditry.” If they can’t take the time to actually comprehend and digest your words before spewing off their ignorant crap, then you shouldn’t place any bearing on THEIR words either.
I thought your post was very brave and compassionate. Not many people would have the balls to write about that. You did, and yes, you therefore opened yourself up to these kinds of comments. But that doesn’t mean they are true. Keep fighting the good fight for the greater good.
The Lonely Midwife said
RR,
As a L&D RN, midwife, and infants that were cared for in a NICU your post was right on. I think it is unfortunate that NICU nurses are put into this situation as often as they are. Many things could be done before we get to that point. Honest and factual discussions with women throughout their pregnancy regarding gestational age and milestones, review risks for PTL, educate those women at risk for PTL about NICU care, limits of viability, etc. A multidisciplinary approach to counseling these families prior to birth–nursing, ob provider, pediatric providers, NICU nurses, social work will not avert the tragedy of preterm birth but it may avert the tragedy of needless suffering on the part of these precious lives and grant the opportunity to parents to give the ultimate last gift of love and comfort to their children.
LM
midwest woman said
The hardest thing about nursing is that thin line we walk between reality and hope. You walk it well. If you struck a negative chord, look at it as a victory. You posted passionately, courageously and a dialogue got initiated. Anything worth standing up for always seems to have a price. You’ve got guts and integrity. Stay the course, girl. We need more of this.
Diana J. said
Hey there – Just wanted to add my support for your post from the other day re: infant resuscitation. This is obviously an extremely difficult grey area, but I thought you made some absolutely wonderful points and it was great food for thought. As I think I’ve said here, I’m 100% pro-life and still have doubts about the resuscitation of the babies you mentioned. While believing that all human life is sacred all the time, it is still the case that some babies are just not meant to stay earth-side, and using emergency measures to resuscitate can be barbaric rather than loving. I remember what one midwife said about the Amish – that they prefer to let such cases die peacefully in their parents’ arms rather than taking extreme measures – and one certainly can’t accuse the Amish of being anything other than pro-life! It’s a fine line to walk, and I think you’re doing a great job. Keep up the great work and the great blog!!
scout234 said
I started reading your post to my husband and he stopped me at the part about the ear being ripped off. How can people not get it?
realityrounds said
I WANT TO THANK EVERYONE FOR ALL THE KIND COMMENTS. MAYBE I AM BEING A TAD BIT SENSITIVE, THIS BEING NATIONAL NEONATAL NURSES WEEK AND ALL! (WHICH I LEARNED FROM THE AUTOMATICALLY GENERATED POSSIBLY RELATED POSTS, FROM WORD PRESS. HOW DID I MISS THIS HALLMARK HOLIDAY?)
Anyway, I appreciate all the comments. It is a difficult topic that really resonates with me, and I felt people should know what the realities are. It can be sad and depressing, but I still love my work.
*Tomorrow I will be posting a happy post about preschoolers eating marshmallows. I am not kidding, that will be Saturday’s topic. Marshmallow haters beware!*
Joy said
It isn’t that you set infants aside to die- it’s that you do everything in your power, per their parents’ preferences and desires, to do what you can to let them live even if you know they will die. I don’t see how that makes you heartless. You know, or have a feeling, which ones will pull through and survive. Unfortunately not all of them do survive, even after months of care.
I am very, very pro-life. And I don’t see why people are hating on you. You’re TRYING to save lives, even if you don’t agree that they will or can survive. I hope I’m making sense. I feel like I’m rambling.
Kelli said
I have so much respect for the job you do. You keep doing the wonderful work you do. Nurses such as yourself are true blessings in the NICU.
Kelli
scorpiosity said
Just wanted to echo the sentiments of the previous comments. You seem to be very compassionate and dedicated to your job. I chose not to pursue NICU because I know that I can’t care for micro-preemies day in and day out. You are a special person and a special nurse to work where you do and to open yourself up to criticism for asking the tough questions. Posting your ideas and opinions is hard, especially when the topic is the lives of children. Most people are uneducated about the specifics of your job – it will be those who are most vocal and most hateful. Engaging in such rhetoric makes people feel uncomfortable because they actually have to think.
Buscando la Luz said
I will be another echo. I salute you and the other nurse-heroes like you. Death is not the worst thing that we humans face. Thank you for working hard to save babies, but thank you also for speaking out about the grace and mercy of letting go of the tiny ones whose lives will be brief but peaceful.
Sarah said
Wow, I couldn’t believe any of those comments! I read the post that is being referred to and couldn’t have agreed with you more.
I have thought about this a lot as I have had 13 miscarriages, and 3 pregnancies that made it past viability. My three pregnancies have been difficult and with each I have been in and out of the hospital right around 22-24 weeks. My doctor spoke with me and we talked about what is ethical and what is reasonable to expect of a baby if they are born during this time. He discussed what we might want to do, even at 24 or 25 weeks. We knew that if the baby was too early we would let him or her go peacefully in our arms if they made it even that long. It would be a difficult decision to make, especially after multiple miscarriages and having hope that a baby could survive but those precious little babies would likely die sooner then later and most likely would not have come home with us, we realized this.
Fortunately, we did not have to make this decision as we have had a 37 week girl who was a healthy strong baby, a 33 week girl who was in the step down nursery of the NICU for 3 weeks to eat and grow, never one any oxygen or other support and our precious baby boy who was born at 31 and 2/7, on a vent for four hours and then stayed for 6 weeks to eat and grow and grow out of periodic breathing, etc.
While we have been blessed thus far to have healthy children who were clearly born beyond the point of viability, we know if we were to try and have anymore children we might not be so lucky. Thank goodness for NICU nurses like you who help those who struggle through this loss, to know that they have done the right thing for their precious little ones.
RN to be CNM said
I think that is awful that people write those comments. Maybe it’s because they have not educated themselves enough of the topic. Because if they knew… NRP guidelines definitely recommend a short resuscitation (You’d think after taking it 3 times I would get that answer right!), however, 10 minutes seems like such a limited time to change a life. However, every situation is different. I’ve seen a provider run a code for 20+ minutes before realizing they needed to stop. I don’t think that anyone can understand how hard this affects the whole team!
I don’t think that makes NICU nurses heartless!! Being an L&D nurse at a tertiary care center, I’ve seen people go both ways. And I hope that if I’m in the case of delivering a 22-25 week (which I hope never happens) that I would be strong enough to just enjoy the few moments with him or her rather than take every intervention possible. Sometimes, the hardest decisions are the right ones. Keep doing what you’re doing! You definitely are a hero!
Sarah said
I had two preemies in the NICU–a 32 weeker and a 29 6/7 weeker. The NICU nurses were amazing. Their encouragement, support, and care made all the difference in our time in the NICU and how successful my babies were when they came home. My two babies were far from the most critical patients in the NICU, despite how difficult their beginnings were. I can’t imagine being a NICU nurse and working in such an emotionally difficult job.
I don’t think most people have any idea what is meant by preemies needing “a lot of care in the beginning”. They obviously didn’t read your vivid descriptions of intensive neonatal care. Thank you, thank you, thank you for going to work each day and being good at what you do.
andi said
i just wanted to lend my support, as well. reading this and the previous post helped solidify my decision that, should this baby (currently 22 weeks) decide to be born before 25 weeks, i will ask that no heroic measures be taken. i have always, in the pit of my stomach, felt that there was something off with trying to resuscitate a baby born so prematurely. no doubt some would call me callous. i guess i would much rather my baby be held and loved and let go as gently as possible.
i do not envy you your job. it isn’t something i could do. but i applaud you and your commitment to these new little lives trying to survive against all odds. you have more strength than i could ever hope to.
MomTFH said
You and others like you are heroes. I am so grateful you are where you are facing emotionally and ethically difficult decisions on a daily basis, while performing technically difficult medical procedures and literally holding life in your hands. It’s a huge job description, and it’s a shame you have to suffer such ignorance and hostility.
Labor Nurse, CNM said
Wow…i haven’t seen any of those negative posts/replies/comments anywhere but life these days don’t allow for much internet reading anyhow.
I certainly don’t think the people who have posted such comments have any true understanding of NICU care or the ethical dilemmas such care brings forth. I feel the same as you about where the line should be drawn and what is just and ethical in the care of such babies. The news stories we hear about a 21 weeker surviving or some similar such medical miracle makes me very nervous about what this means ethically for neonatal providers worldwide. I wouldn’t be surprised that by the end of my (hopefully) long career we will be “saving” 16 weekers! Of course every baby should be given a shot, but when all signs point to horrible outcomes…well…it certainly doesn’t seem right to create more suffering.
S said
I’m a little late with this, but I wanted to also voice some support. This is ridiculous. After watching the h*ll my little baby cousin and her mom went through when she was “only” 5 weeks preemie in the last months, I can’t imagine how someone could not see what you do with compassion.
Valerie said
I also am a little late in responding to this post. Before, I replied I made sure that I read your original post. Let me say this: These are not easy decisions for anyone to make and some times to make them, the persons involved, doctors and nurse, rely on protocols. Many that are not in the health care field do not understand that the protocol process is determine by scientific study and the evidence from the study provides the basis for the decision. Therefore, the public is ignorant to the process. That said, the protocol cannot account for every case. Yes there will be the outliers that do not fit the bell curve. God bless those little miracles, however, we are not God, so we trust that He will understand our mistakes and accept our best try. That is about all we can do.
As a stanch believer in the right to life, I am horrified that some one could get an abortion at 24 weeks (and they can). It seems ironic to me that if you are 22-23 weeks pregnant and want the baby, go in to labor, any expense will be spent to save the child. And the next woman that does not want to be pregnant can abort a 22-24 week baby and let it die. This is where the anger comes from. How do we know that these very fragile 21 week infants are not meant to be God’s greatest miracle if we just expend the funds? I guess we will never know. And we can’t know.
It is about money, but it is also about care. Nurses care for patients. If nurses care, then we do everything we can to nurture patients. When a tiny, fragile 21 week infant is born the greatest care we can give it is to wrap it warmly and place it in the arms of the ones that love it. These tiny people cannot see but they can hear and what better care for them to hear the words of love from their parents, to be baptized if that is their faith and hear the word of God spoken over them. This is a death with dignity. The same can be said for those on the other spectrum, the elderly. Dignity in death does not come from the person dying. We give dignity to the dying by respecting them and caring for them. If we can do that for an infant born at 21 weeks, then the parents have the opportunity to give the child a name and celebrate a short but beautiful life.
Ciarin said
RR, I got your back! I thought you wrote an intelligent and well-written post about this very sensitive subject.
I am a CNM who has had to catch a couple micro-preemies before. No matter how well and how many different people explain to momma, they just can’t see past the grief and the disbelief that their baby will die. I can understand the irrational thought processes that occur. Doesn’t make those beliefs correct but I can understand them.
RR, don’t take ill-thought comments and irrational, emotion based comments get to you. They cannot reflect who you are. They don’t know you, don’t know what it is to care for a child with disability, don’t know the science, don’t know the job. These deaths affect the care providers deeply. I remember these deaths more than many live babies. It’s hard to face tragedy and not be affected by it. Those that make the stupid comments don’t have a clue.
Angela said
You have my respect and support–you did a great job of trying to educate people. A mother who has just given birth is not going to be thinking rationally, but only emotionally, no offense intended. Hopefully such mothers have access to counseling after such an experience; they need to understand what happened as well as grieve and get closure. Just because technology can occasionally pull off “miracles” doesn’t mean it should be attempted across the board. Some people seem so emotionally caught up in the right of a fetus to live that they forget there are some 47 million people in this country without access to any health care at all apart from an emergency room. I would like to see these people express the same compassion for our fellow citizens who are suffering from lack of health care. An emergency room is not a good substitute and it ends up costing the taxpayers more; access to government-run health insurance is not about killing fetuses and old people, it is about giving every citizen access to health care and a chance to live.
Katherine said
The people who are accusing NICU nurses of murder are being totally histrionic, and the people who say that “life is sacred” are not acknowledging that part of its sacredness comes from the fact that it is sometimes fleeting. These severely premature babies are just not capable of surviving outside the womb, and I know that if I ever had a premature infant, I would choose comfort measures only, treasure the moments I have to spend with that baby as it expires, and let. it. go. Obviously God wanted His child back, so who am I to try to stand in the way of that? And what kind of “sacred experience” is it to have your child’s body slowly decay in front of you over a period of days or weeks while confined to an isolette with tubes and wires, unable to breathe, eat, be touched? In this country, we somehow think that death is optional. Well, it’s not, and in the case of extremely premature infants, it seems a much greater cruelty to kill these beings slowly and painfully than to let them go when it really is their time.
Good for you for laying out the reality for the vast majority of these infants and their families.
Lauren said
You are not a hero because you want our children to die. Please, spare me your moralizing. You thought that the child you treated would be better off dead. That is dispicable. I was one of those women who came into the ER with ruptured membranes at 23 weeks. Thankfully my medical team worked to save my son. He is now a healthy, happy 4 year old. Remember him the next time you’re wishing death on a child at the edge of viability.
MomTFH said
What is despicable is you taking your extremely good luck and using it to abuse someone on the internet who works every day to save babies like your son.
In neither of the posts does she talk about letting 23 week gestational babies die, by the way. So, not only are you attacking her, you are attacking her for following protocols that would have allowed saving your child.
For shame.
Jen said
Lauren:
I know a pair of twin 27 weekers that are deaf and blind. In addition, they have learning disabilities. They are grade school age, yet will never leave home.
You are lucky you had the outcome you are having.
In regards to the true long term effects, at four years of age can you truly claim to know?
I am glad the effects of the premature birth, thus far, are low. What other problems does your son struggle with? Does he eat normally?
Another thing to consider is not every ‘23 weeker’ is the same. I am quite certain an NICU nurse with years of experience has a better feel, based on presentation, as to what babies have a chance at pulling through.
-NICU grad
Lauren said
Oh please. For shame? She talks about wanting a child’s increasing vital signs to turn the other way. She wanted that child to die. Luck had nothing to do with my son’s survival. An amazing and proactive team of doctors intervened whenever necessary to save his life. I’m just glad that none of them bemouned the fact that his vital signs were improving.
realityrounds said
Lauren,
I did not want the child to suffer. I did not want the child to die. We did everything to save the baby I was writing about (fictionally). He had prolonged asphyxia and hypoxemia. Epinephrine can cause a transient increase in heart rate. I prayed with the family at the babies bedside. We did everything medically possible to save him, but it was not enough. I did not want the baby to die and see the pain in the families lives. I just did not want any prolonged suffering of this infant.
MomTFH said
Luck had everything to do with your son only having minor hearing loss. I think it is wonderful your son is doing so well, but you are denying the suffering of the vast majority of parents whose babies born on the edge of viability and never make it out of there.
You are missing the point of both of these posts. I hope no one treats the wonderful team of doctors and nurses who saved your son with such insensitivity. I am sure they struggle with major ethical and emotional issues every day, and your selfishness toward the real psychological toll that takes on the people who do this amazing work is sad.
Dr. Jen said
Luck and genetics have everything to do with survival at 23 weeks. The odds are very low. It is like wining a lottery.
The percentage of 23 weekers who only have mild disabilities is very low.
Kyrsten said
I wanted my son to die. Does that sound like an unforgivable sin? You watch the child you longed for, prayed over, named and loved from conception suffer innumerable, horrific health problems in the first 24 hours of life and *then* decide if it’s “the will of God” to forcibly keep these precious ones alive, artificially (and my son was a 28-weeker, nearly 3 pounds). No, God bless NICU nurses, neonatologists, pastoral staff, and family who allowed my son to die peaceably and free of pain… Just as God bless the same, who cared for his twin brother, now nearly 3.
Lauren said
I should also add nurses to that team, I did not mean to leave them out. My son’s nurses were wonderful.
realityrounds said
Thank you for including the nurses. NICU nurses are very dedicated to caring for infant’s like your son Holden.
KM said
I am a mother of two, and pregnant. I read your article and was touched by it. I could not do your job, and cannot imagine the emotional toll it must take, nor the lengths that you must go to “leave work at work”. Further more, you have as much of a write to freely express (and healthily expel) your emotions and I’m disgusted that people would attack you so shamelessly, especially because some of them may very well( although God forbid it) find their infant’s life in your hands someday.
I posted on another blog in regards to this article that my step mom lost a daughter at 23 wks and chose to let her go. We all must take our own paths and I would be full of gratitude to have someone care for my baby who clearly feels so much for them. True love is not selfish and I think that your article shows a complete and total selflessness. As if it would be easy to let a preemie die??
Thank you for every thing you, and those in your profession do.
Yehudit said
Hey Reality Rounds,
So sorry you are getting such a hard for time for simply stating the obvious: that it is cruelty to attempt to ventilate babies that do not have the lung development to make that ventilation possible. I have seen this (in babies of later gestation, but with pulmonary hypoplasia due to lack of amniotic fluid). If there are no terminal sacs ready to develop into alveoli, then you actually don’t have a surface that permits gaseous exchange. The gestational age limits for resuscitation are not arbitrary, but based on the (very lower limits) of this physiological fact. What is wrong with people that they do not understand this? The fetus (and extremely premature baby if it is born at this stage) is NOT physiologically just a “very tiny baby”. It does not have the basic physiology required to support life, and we cannot substitute our fancy equipment for what is not there – because there is no technological fix for this lack of development.
Appreciate what you are doing here…..
Yehudit
Fred said
As I understand it the baby was alive when born and denied ANY care.
Furthermore, it boggles the mind that the NHS claimed to know the “age” of the baby within 2 days. Did the woman have IVF? If not, how could the moment of conception be known with such accuracy?
Finally, I would not to be in any hospital where someone on the “team” claims to require a voice in the path that my care takes once I have decided on it. That person knows nothing about my life, my values, or my risk preferences. Nurse or not, that team member might not even know as much about my care as I do and has no business telling me how much my life, or my suffering, is worth.
NICU nurses are members of a professional team hired to do a job. Professionals do the best they can for their clients, in this case the babies, and parents of the babies, in their charge. Whining that NICU nurses “deserve a voice in what happens” and lobbying for some of their patients to be left to die when other people disagree is selfish, not professional.
realityrounds said
Fred,
I am not sure if you read my original post, but this is what I said:
“If we are called to a delivery for unsure dates between 22-23 weeks, (the NICU team does not attend deliveries between 21-22 weeks) we first counsel the mom on what will happen and give her as much information as possible, regarding outcomes and survivability. Her choices are to do nothing and provide only comfort care, to start resuscitation until the baby “declares” himself, either by improving or decompensating, or request a full blown resuscitation. The physician’s at the delivery will assess the infant and it is ethically and legally appropriate to withhold or stop a resuscitation on such an extremely premature infant based on how the infant presents himself.”
Your comment basically reiterated my point that it is up to the mom and the team to decide a course of action for the infant. I never said what you quoted that nurses “deserve a voice in what happens” in the delivery room. Never said that. I said we “deserve a voice” in expressing the real ethical, moral and social issues that caring for infants at the edge of viability bring about. I do not believe, and never said, that babies born alive should not receive any care. But it is very unethical to resuscitate babies born below the age of viability. We do not even have the technology to resuscitate them. Comfort care should be given to these babies. If that did not happen in the UK, I agree with you, that is a shame.
Thanks for your comment.
Laura said
I think you are an incredibly brave person and as the mother of a premature infant I thank you and all your colleagues from the deepest part of my heart.
Many people who have never been involved with a premature child cannot possibly understand what it is like emotionally, financially, and ethically to deal with this situation. It seems so simple to the lay person–a baby is sick, you have to heal it. But it does not work that way with premature babies. The baby is supposed to be inside the mother for nine months for a reason and there is no man made way to replace that environment. A person who has never been there cannot know what it is like to be told you cannot touch your own child because it causes him over stimulation. That you cannot take your child home with you when you leave the hospital, that someone else will be holding him when his cord falls off or when he cries for the first time. That you cannot control his situation, that you cannot take him home until he learns to eat a certain amount, that you have to weigh his every diaper to make sure he is eliminating the proper amount of fluids, that the first time he has a bath it is at the hands of someone you did not know before this thing happened to you and your family. Or know the shock of walking into the NICU and seeing an IV in your tiny baby’s head, or what it feels like to accidentally pull the feeding tube from your baby’s nose and worry about the pain you might have just caused your child. And this was with a baby born only six weeks early…
Everyone romanticizes the NICU, all you have to do is go on the blog of some parent who has had four, five babies at once to see this. They talk about the NICU staff like they are family and how exciting it is to reach certain milestones. No one ever notices how they gloss over or leave out the bad parts. People assume the NICU is only an inconvenience, a necessary evil. Its not. Babies die in the NICU.
As difficult as it may be, I understand that a baby twenty weeks early is too premature to be rescued. It may seem to Jayden’s mother, whose child was only a day or two from what might have been considered viable that the doctor’s decision not to resuscitate was cruel. But what would have been crueler would have been watching that baby struggle to survive and then to die just weeks or months later. I feel for Jayden’s mother. My own niece was born at twenty weeks and my sister was shocked to hold her child and discover she was still alive, struggling for her every breath. It is the most painful experience to hold a doll-like infant and know there is nothing you can do to save it. But would it be worth taking that perfect child and turning it into a human experiment–which is what all premies are–forcing it through so much pain, only to have it die or become so disabled it never has a chance to run, to play, to learn?
And for those who say that the pain the infant goes through in the NICU will never be remembered has never raised a child who spent time in the NICU. They do remember. There might not be conscious memories, but there are irrational fears that can have no other logical explanation. Babies remember.
Trish said
Reality Rounds,
You are helping me.
Please don’t quit blogging over this incident because your voice and message are important and you are helping me. I struggled with my feelings about NICU staff after my preemie’s very difficult 138 day stay. Clearly, I owed them my son’s life a dozen times over and there were certainly many kind and loving people involved in his care. But as the depths of his Sensory Processing Disorder and pain memories (who knew a toddler could be completely terrified of tape, bandaids, stickers or anything else that might stick to him?) and other issues became more apparent, the NICU staff seemed to fall into two camps in my mind: those that had been very callous to the suffering he had endured, and those that were completely clueless or overly optimistic about what our life would be like “when we got home”. It was a very painful dichotomy for me.
I began searching for evidence that NICU workers “get it”–that they both have compassion for their charges whose suffering is inevitable in that level of medical care and are not being deliberately obtuse about the outcomes. I am ever so grateful to have found your blog. You get it. I have wept with release at several of your posts. You are helping me. And I’m sure I am not alone.
There is so little accurate, generally available information about prematurity and its after-effects. All I knew as I lay on the delivery table was that I had already received the “Congratulations, you’ve reached viability!” email from babycenter. In the absence of information, the only thing we have to base our decisions for our children on is that emotion–”save my baby”. It is essential that Reality is out there to balance the mainstream media’s warm and fuzzy miracle baby notion, where the preemie is born tiny but “perfect” and just spends a few months hanging out in the hospital to grow before moving on to a perfectly normal life as a college football player. Now that I understand that neonatal medicine is neither magic nor cut & dried science, if I were ever again facing a 22-25 week delivery, I might choose to fill my child’s life with nothing but the soothing warmth of my loving embrace. I can say that, and still adore my precious child who did survive and be eternally grateful for the medical professionals who did save his life. I know that neonatal treatment is a constantly evolving art and that you are getting better all the time at walking the line between help and harm. However, I sincerely hope that neonatology makes vast improvements in outcomes of the infants it is saving now before it begins to push the envelope into earlier gestations.
I am sorry that you got run over by the ignorant cyberbully zealot train. They need the education you offer here more than anyone. The next time they go to insist on life at any cost, the mental image of an entire muscle sliding off as an IV is removed might give them pause to reflect. Your message is important.
realityrounds said
Trish,
Wow. I do not know what to say, but, Thank You. I must seem like a terrible coward to you, who “really” has to face the difficulties of prematurity. You have given me a lot to think about. Parents of preemies also tend to be forgotten once those discharge orders are written. Thank you again.
Jen said
Hi, I am a premie. I will tell you this, although I was beyond the edge of viability I have suffered health problems since birth.
I also babysat two blind and deaf twins while in high school, both were premies beyond the ‘edge of viability’. The parents? They, by three years of age, still didn’t know if they made the best choice for their children. They loved their kids, and the care they gave them was one of the best examples of complete devotion I have EVER seen, but they questioned their decision.
I, I was far beyond the edge of viability and still had to be airlifted at birth. I suffer cardiopulmonary issues and sight issues. Were I to have a 22 or 23 weeker, I believe I would allow nature to take it’s course despite the surge of maternal hormones.
Letting an infant on the edge of viability go is not cruelty, it is often kindness. When the infant is before the age of viability, it is not only kindness, it is the only morally just decision.
In America as well as abroad we need to learn to recognize medically futile situations. For instance, my grandmother was turned down a year ago for surgery because she might not make it through. When I say turned down, I mean even if the family were to pay for it outright, the doctors would not have performed it. Without this surgery, we were told she would die within three months.
She wanted the surgery, we had to tell her it was an impossibility. The doctors were right, she was far to fragile, healthwise, to undergo the surgery. She wasn’t clotting, and the doctors knew that putting her on a respirator would mean never being able to wean her off of it again.
Perhaps we need better support systems for those who lose infants to birth before viability. I think that our problem tends to be an inability to cope with death and loss rather than a medical system that lets people (including babies) die before their time.
-NICU survivor.
Dr. Jen said
I thought your post was fantastic. I am an OB/GYN, and I have also made the decision to not resuscitate my son born at 22 1/2 weeks and to go go full court press with my two born at 26 weeks. I understand the burden of prematurity, emotionally and physically. I also understand the pain of losing a child.
I feel very sorry for that woman who delivered before 22 weeks, but her opinions about rationing her son’s care are invalid.
The reality at 21 weeks is a VP shunt, a tracheostomy, a G-tube, and a wheelchair and probably > 200 days in the hospital. Most will die before they get to that point.
It is sad, hard, and really unfair, but it is true.
As a dooctor I knew those realities, but I think they are hard for some parents to accept. I agree with focusing efforts on parent support.
Nice job.
Dr. Jen Gunter
realityrounds said
Dr. Jen,
Thanks so much for your input. It is invaluable on many, many levels. I may have sounded to harsh in my post, thus illiciting such emotional comments. But there is a truth in the outcomes of babies born before the age of viability, and it is a heartbreaking truth. You know this on levels I can not comprehend. Again, thank you for your input.
Dr. Jen Gunter said
I don’t think stating the facts is necessarily harsh. I think people just can’t understand that many babies don’t make it when they are less 25 weeks. Many of us asume that if “he can just get to the ICU” he will be OK.
The problem is the Press focus on miracles and not on relaity. We hear about sextuplets or octuplets (clearly malpractice, but it gets you a TV show), not about the triplets who didn’t all make it. No one was at my house taping when I had 2 boys on oxygen doing physical therapy for cerebral palsy. i
Just my opinion. Keep up the great posts! Thanks for your nice post on my new web site. I am hoping to provide good, evidenced-based medicine with inside tips and tricks. My boys are doing very well. We had an aswesome NICU and I adored our nurses, NPs, and neonatologist
Jen