tralalaRN

The "miracle baby stories" was a reference to how micro preemies are portrayed in the media, by hospital PR departments, Children's Miracle Network Telethon, etc. It is not MY reference, and never would be. Also, there was a fabulous article that was written and published by Helen Harrison, author of the Premature Baby Book. . Family-centered Principles of neonatal care - published in Pediatrics in 1993, I believe. It's been referenced in future works many times since, but the original is spectacular. It might be worth a read.

First of all they AREN'T miracles, and should never be referred to as such. This implies that the people working in the NICU are God-like, and of course no one can make that claim to fame. . . secondly, it's very VERY telling that you mention all of the people on the "care team" - but do not mention the parents/family. Hmm. .

It's universally accepted that the lower the gestational age, the worse the outcome. Are there exceptions? Certainly. We ALWAYS hear about the exceptions. . those are the miracle baby stories that come into play showing the general public stories of the NICU. Prematurity remains the number one cause of both death and disability in the newborn period. That isn't a secret. We have lowered the mortality rate as newer technologies have been introduced in the NICU, however, the morbidity rate is abysmal among 22-24 weekers. The cost in pain (tortured to life has been used to describe their care in the NICU) and then long-lasting horrific pain/disabilities are far too common. I'm not saying this doesn't happen to 32 weekers, but the chances are far better that they will fare better. IVHs with accompanying acquired hydrocephalus is a huge complication among the earliest kiddos. This cannot be denied. And good for your lowest birthweight kiddo doing great - parents and the general public need to hear the other side once in awhile also.

Of course. I do get that. Hence the topic of this thread. . . the saving of 22 weekers. . Peace.

There was an article a long while ago, that said the turnover of nurses in the NICU is higher than any other nursing profession. It's that crisis of conscience and the justification you mentioned that always prevented me from ever wanting to go into the NICU after seeing the other side - the years of suffering inflicted upon preemies and their families. One would argue that THEY are the collateral damage in order to save a very few micro preemies who will live normally and independently. It appears the NICU is a place that loves to be lauded as a place of miracle babies, and those who work there then would be miracle workers? The truth is far different, however, as you know, and seldom seen. There was a family who had triplets - 2 survived. They were put on the Children's Miracle Network Telethon for several years (notice the word miracle once again). . but as the surviving triplets grew, and had leg braces and thick glasses, etc., they were not ever again featured. This is what is presented to the world - cute lovely babies - disabled children and adults, not so much.

Yes, there are definitely things worse than death. The general public is never faced with the ethical dilemmas in the NICU. And how ironic that it is probably the most ethically fraught area of medicine of all! The Baby Doe Laws should never have come to be, and should be rescinded to make way for honest discussions with families who are blindsided by this. Babies who somehow survive the NICU seemingly intact - (I say seemingly, because I know of a micro preemie who was dx with autism at age 16, and will never live independently). . should not be the only ones shown to the public through hospital PR departments, the Children's Miracle Network Telethons, etc. The media is a powerful force. Likewise, I've seen neonatologists get mighty angry to suggest what is going on in the NICU is less than pretty spectacular. It's the worst kind of gaslighting. Helen Harrison, medical researcher, author of The Premature Baby Book, and parent of a preemie (CP, autism, etc) was a brilliant woman who spoke and wrote volumes on neonatal ethics and treatment of infants and parents. She was often severely attacked by neonatologists. I've seen parents attacked for speaking the truth about how difficult their lives are with former micro preemies. Silenced, shamed for telling how difficult and pain-filled their child's lives are, and domino effect - their own lives. Bankruptcies, loss of career, loss of marriages, family struggles. The choice should be the parents, but in many cases, it is not.

All the responsibility for dealing with the messes other people make? I would say that is not true. Your shift ends, your career can change. Parents of former micro preemies who face a life time of severe disability and medical fragileness however, don't have that choice.

And llg - My point was, it would give one a healthy balance to spend some time in the homes, community, school system, social service system (and the PICU as adventure rn described above) to get an understanding of what reality is like beyond the NICU for micropreeemies and their families. I wasn't advocating for NICU nurses/ MDs etc to be switching back and forth between working in the NICU and working in the community. That would be ridiculous. I was suggesting it would be nice to get a well-rounded perspective of what we're doing to these kids and their families long-term. . so there is more of a broader understanding of survival beyond the doors of the NICU. I believe this would make for a more compassionate NICU caregiver in the long run, don't you?

adventure rn Yes, you articulated so well, the point I was trying to make. Thank you.

It was not my intent to "blame the nurses" - it's the NICU system as a whole, plus the hospital PR department that wants to always couch saving one pound fetal/infants as "miracles". .rarely is the really challenging other side shown. There is a whole lot of money behind saving micro preemies. . $10k per day approximately for the NICU? Then there are the multitude of follow up clinics - trach clinic, CP clinic, Peds neuro, Peds neurosurgery, dietary, g-tube. It keeps them coming back . .Neonatology as a whole wants to bask in the glory of saving micro preemies, without really wanting to know what the future holds. Did you know that many parents (particularly mothers) suffer from neonatal PTSD? It's a war zone for them. Seeing what is done to their infant. Some have referred to it as "torture". . it's the reality of the NICU. Up until the late 1980s, many preemies were operated on without anesthesia. Heart and neuro procedures even. By presenting only the miracle baby side to the media, parents come into this with unrealistic expectations. Many feel we've gone to far, and in this extremely volatile health care system as a whole, cuts to Medicaid and other social services, cuts to educational programming - particularly for the severely disabled - we are asking too much of parents (and society) to deal with. It's been said parents have choices? But do they? The Baby Doe Laws do not appear to support parental "choice". . and those laws are still in place. One family in my area had 22 weeker twins 20 or so years ago. They both passed shortly after being born. They were devastated, but they went on to have 4 full term healthy children. Families with children who are severely disabled are extremely stressed and isolated. They don't get to go home after an 8 hour shift or a 12 hour shift. Perhaps we should advocate for good neonatal survivor institutional care to help lift the burden from families.

I'm suggesting that the NICU is fairly insulated from the real world. The years and decades of pain and suffering inflicted upon families has been well-hidden from the public. Families go into the NICU with unrealistic expectations. . and yes, if you're working in the NICU, this is your choice. Families don't have a choice. The millions of dollars it requires to "save" a 22-23 weeker, and the millions more to support them through their lifetimes, and above all the horrific pain, should make us ALL question the wisdom of this. And yes, I do advocate for passive euthanasia in response to a 22-23 weeker, as well as any other extreme preemie who has a large IVH. Unfortunately, with the 1980s Baby Doe Laws still in place, this cannot be a reality, but it should be.

When I started my most recent nursing career, I was encouraged to go into the NICU. . I told the MD and a NP, that I could not live with myself knowing how severe the micro preemies turn out far too often, and the devastation left in the wake of their survival. . the pain and rehospitalizations, for far too many. A good friend with a micro preemie who died after 12 years of hell told me "we finally undid what neonatal did to her". . Are there exceptions? Certainly. These are the miracle baby stories held up for the public to ooh and ahh over. When only one side of the story is presented publicly, parents who go into this situation believe their child will be the miracle baby too. NICU health care providers often counter-act saying "we don't know which ones will do well, and which ones don't" as being the reason to aggressively save them all. . honestly - that's a crock. Even those without an IVH can have devastating outcomes due to hypoxia, etc. I know a young adult who breezed through the NICU as a 25 weeker, came home without a monitor or meds, RA. Today, she is on SSI due to her many disabilities.

Anyone working in the NICU should be required to work for 6 months caring for former micro preemies in the home (first). The 3 year olds, 10 year olds, 30 year olds. The trachs, vents, autism, severe learning disabilities, seizures, severe cerebral palsy, severe cognitive delays. . the on-going shunt and orthopaedic surgeries - the pain inflicted upon the survivors, the damage to marriages and families. It changes one's perspective dramatically.

Well, interestingly, my daughter had grand mal seizures - uncontrolled no matter the medication or surgical procedure we had tried. I started to notice that her seizures were most often affiliated with the full moon. Day before, day of, or day after the FM were days when typically her seizures would hit. I mentioned this to her FP who didn't really believe me, but her neurosurgeon certainly did! He said that kids like my daughter with hydrocephalus as an underlying condition, most certainly seem to have more seizure activity around the full moon. He said that while he worked at a pediatric hospital, he had seen kids with seizures come in much more frequently around the full moon. His theory was, that if the full moon can affect the tide, it certainly could affect the the fluid balance in someone's brain, thereby causing seizures.

In premature infants with post-hemorrhagic hydrocephalus, over draining can cause the skull to collapse and cause more hemorrhaging.

This is an outstanding series of articles. Thank you! Well done.

This was a succinct article, clarifying the two B's. Thank you! Such a difference between a personality conflict and true bullying. Bullying certainly is the nurse who is in a position of authority who has targeted you, and whose main goal is not mutual respect, but puts you in a position of being in fear of being thrown under the bus. I've seen a number of posts here where nurses have asked "when do I know if I should be looking for another job?" If you have an inkling that your license is at risk because of the other nurses' behavior toward you, it's probably time. I've seen bullying become "mobbing" when the bully is able to swing other nurses to her way of thinking, and/or is good friends with management. Then, IMO, it's time to cut your losses and look elsewhere. You should be able to leave your job at the end of the day, and retain your peace. Nothing is worth your loss of peace.

My first degree was in marketing, and I remember well the personnel management class and the discussion about being impossible to be an effective manager as well as a friend. I have worked in 2 hospital departments where this has shown to be true. The first, manager and a couple of nurses were very chummy - went out together socially, and certainly were favored. These couple of nurses got away with murder practically - very unprofessional behaviors that went unchecked. Second time this happened, it was a dept where the manager had several of the dept nurses as close friends - so close they were bridesmaids in her wedding. These gals didn't have to work night shifts, frequently clocked over time, where the rest of the staff where chastised if shift went over, etc etc. What gets scary is when dangerous things happen, and you feel you could get thrown under the bus by one of these people, and you know management would back them and not you. Anyway, just some random thoughts. I hope you are able to find peace and can stay if you like, otherwise, get your experience, and move on.

this is so dis-heartening, no - disgusting! poor fetal baby.

Sooooo many times, over the years, people (many of them health care professionals who should know better),have said that because of the girls being born at 24-25 weeks 25 years ago, that is the reason for the severity of the disabilities. Neonatal has come SO FAR since then. . I usually respond with - are you telling me that preemies no longer ever have brain bleeds? In my work with many parent groups - several of them with parents and professionals who are concerned with neonatal ethics. .many people are saying that our social service agencies and schools are seeing not only more disabled children, but more SEVERELY disabled children then ever before, many of them former preemies. So while neonatal overall, is more successful in "saving" these very tiny babies then they were perhaps 25 years ago, they are not being saved very "well." And families and society are left with picking up the pieces. Personally, I think we need to abolish the archaic Baby Doe Laws, and limit miracle baby stories, so parents come into neonatal with realistic expectations. Parents need to know that there are worse things then death, and it's ok to let these tiny ones go. Everyone should read "Baby At Risk" by Ruth Guyer.

Actually, the grieving is for the many many times I sat by her bedside in the NICU, in the PICU's, peds, ERs, at home watching her suffer and being powerless to stop it. Well, I was finally able to stop it - with her aspiration pneumonia, I advocated strongly for comfort care, and my wishes were ultimately honored. She had a peaceful death. It took 25 years to undo what neonatal did.

An update. Mercifully, my daughter passed away on July 8th after being hospitalized for aspiration pneumonia following status epilepticus. She was loved, she will be missed, but she is so at peace. When I heard she had passed (her grandma was with her), I walked outside, into the starry night and stood on my front lawn and thanked God for finally taking her home. Her funeral, for me was a celebration of her being released from this life. I realize that many of you may not understand this, but it was 25 years of grieving - watching her suffering in countless ways. Ironically, her twin sister gave birth to a healthy full term baby boy 2 weeks prior to E's passing.

So, so selfish. Good to hear the clinic doing this was not in the U.S. Still - disgusting though.

How unethical. The Dr. who agreed to do this should have his/her license suspended. This is in the same league as Nadia Suleman's fertility Dr. who continued to impregnate her. . I grew up with older parents - my mother was 43 and dad 48 (and already grandparents) when I was born, and this was not easy . .this 70 year old mom is the epitome of selfishness.

How to basically teach caring? Yikes. This seems pretty innate to me - either you've got it, or you don't. But to teach this? It reminds me of that movie Harrison Ford was in a number of years ago where he is a cocky physician. .until he's dx with CA and goes through tx for it. All his Dr. buddies are still so cocky and disrespectful of patients, but now he's no longer really one of them, because he's been to the other side. At the end, he has recovered, and a new flock of med students arrives on the scene. .he gives each of them a diagnosis, and then tells them that they are going to have to go through all of the diagnostics that someone would have to if they actually HAD that dx. The look of horror on the med students' faces is a sight to behold as they are getting prepped for colonoscopies, etc. Nothing like a little personal experience to hone one's caring. . Now I'm not saying that you should set up a diagnostic shop for every nurse on the unit, but would be interesting. .