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.