New NICU Research
Posted by realityrounds on October 5, 2009
A study out of John Hopkins has just been released that analyzes the survivability of extremely premature infants born between 22-24 weeks gestation. Unfortunately, the results are grim, and questions of ethics and quality of life are brought right back to the forefront of neonatology. According to the study:
“Despite increasingly intensive treatment over a 10-year period, mortality rates for infants born at 22 to 24 weeks gestation did not improve over the course of a decade, researchers said”
“All infants born at 22 weeks died during both periods.”
“Mortality among infants born at 23 weeks actually tended to increase (85% versus 73%, not significant).”
“There was no improvement whatsoever for babies born at 24 weeks (46% mortality during both periods).”
Mainstream media also reported on these findings, from MSNBC:
“Very early pre-term babies kept alive with ventilators, chest tubes and drugs to support the heart may live a little longer than they did 10 years ago, but are just as likely to die before ever going home, U.S. researchers reported on Monday.Their study suggests the emotionally taxing and expensive care given these tiny newborns, delivered at 22 to 24 weeks gestation, does not in the end save their lives. Babies born at 22 weeks included in the study all died as infants, regardless of care.”
So the question is now, what do we do with these findings. This is not the entire study, which I do not have access to as of yet. But, what do we do with these findings? For the NICU families and the medical professionals who care for these tiny babies everyday, what should we do?
What would you do?
RR
pinky said
RR it just makes sense to me that there is a limit to viability with preterm babies. We are not miracle workers. The baby has to have the necessary physical aspects to live outside the womb. At 22 weeks that just is not the case. I hate ethical questions. They hurt my feeble brain.
Kathy said
Tell the parents the results of the study, but if they choose to try to save their babies’ lives, work like hell to prove the study wrong. Also, go back and look at factors in the babies that did survive at that young, and see if there were some things they had in common, and work on implementing those.
I think ultimately, it has to be the parents’ choice, just as it would be the patient’s choice if s/he were of age and ability to choose for him/herself, to choose what treatment, and how aggressively that treatment were pursued, in order to try to save a person’s life. My SIL chose not to fight her cancer with chemo because she didn’t want to suffer the ravages of chemo, with her cancer being terminal with or without chemotherapy (although they said she’d live longer with it). This would avoid the outcome of that British woman who is so extremely angry about nobody even trying to save her XPB son — “better to have tried and failed, than never to have tried at all”? The baby still may have died, but the mother wouldn’t be so angry.
Some weeks (months?) ago, you mentioned that there was some therapy that was typically done on preemies for years, and they finally realized it didn’t help, but did increase the likelihood of the babies developing cerebral palsy. Perhaps some of the things they’re doing now, in hopes of improving results, are like that — of no benefit, and perhaps some danger.
There are ethical considerations, and I don’t know where to draw the line — where should one not even try? What of burn victims, as an example, who are so badly burned that they probably won’t survive… but they might… and if doctors try to save them, will necessarily cause excruciating pain, and they will be scarred forever? Should we not try to save them? This is why I think it must be ultimately the patient’s (or parents’) choice — I think doctors overstep their bounds when they make the decision not to treat, even while the patient (or parents) are wanting him to treat. But I look at this as a consumer, not a health professional, so in a way, I can only see one side of the issue.
pinky said
You make some good arguments Kathy. It is hard to see the wee little ones suffer when their odds are so damn poor.
MomTFH said
Keep posting about it! Maybe this is something mothers need to be told as soon as they become pregnant. I don’t know. It’s almost unfair to tell a mother 22 weeks in when she starts preterm labor. But, every potential parent should know when viability starts.
I read a study (that I just looked for on my laptop and couldn’t find…must be at work) that shows that parents feel better and MORE in control when the physicians and nurses are firm about things like when treatment is ethical or warranted, as opposed to in the United States where they are given too much freedom to make excruciating choices that the health care practitioners are much more informed about.
B said
I can only think what I would do if faced with a child who came extremely premature, and that would be to let the baby go. I would hold the baby for his/her last minutes or hours and cherish every second, then grieve as any parent would if they lost a child. It wouldn’t be fair to the baby or us to go through all the medical treatments when the baby simply isn’t developed enough to survive or have much quality of life for the short time they may be alive. It is such a hard thing to face, but in life there is birth and death, and sometimes those are just too close together.
Akiko said
More than 2 million babies and mothers die worldwide each year from childbirth complications, outnumbering child deaths from malaria and HIV/AIDS, according to a study.
http://www.google.com/hostednews/ap/article/ALeqM5j0CmPa9HNAEfl8qp_o0WniD3WLeQD9B5UEOO1
Along those lines. If more women had access to medical care during childbirth the rate of maernal and infant death would be much lower.
Valerie said
I just had received a post about prenatal hospice for families that carry to term a pregnancy even though the baby has a congenital defect that will leave the child unable to live more than a few days. It sounds to me that this type of hospice could be really helpful for babies born at 22-24 weeks, allow the parents to hold the baby, bathe it possibly, name it baptise it and get a birth and death certificate. This seems much more caring for the family and the child then incredible heroic efforts that result in death anyway.
SW said
Speaking from my professional experience as a therapist, I would do your job (i.e., go through the excruciatingly painful process of trying to save the struggling baby) and then possibly share the findings with the parents/families after the baby dies. Hope is very important before the baby dies, when fear and vulnerability is involved. Numbers and statistics are very important for comfort after the baby dies. Healing could take place if people know they are not alone with their loss. These numbers prove that and may even help those who have suffered these losses find one another and ultimately help one another through the experience. I also like Valerie’s idea, but I suspect you would never get a parent to sign/give an order to stop medical intervention and go to hospice–they would likely see this as a betrayal to their child (i.e., giving up on their child). It sure is different when thinking about a baby than it is thinking about removing medical intervention from an elderly person–somehow seems more like an “it was their time” decision when you factor in age, although still very painful.
midwest woman said
I think if people wouldn’t fall asleep at the keyboard reading it I would love to do a post on modern day secularism and its impact on medical ethics. We live in a world that doesn’t much talk anymore about the mystery of an afterlife. If all we believe in is the here and now how terrifying it must be to say the prognosis is very poor. How it sometimes drives us to do more harm than good. How sometimes people put their faith in the machines to do the impossible. That we now believe we truly have control over the time we have here. People avoid these harsh realities becasue we can no longer shift gears. Go from the hope of life with us to the hope of a peaceful afterlife.Grieve and hope..is it possible that these two things can co-exist? This is a muddled comment but I hope you can catch the gist of what I’m saying.
realityrounds said
Midwest Woman,
That sounds like a very interesting concept, and I would not fall asleep reading about it! You should write it, and I get what your saying.
Jessica said
It might be that in this study all the infants born at 22 weeks died. But the youngest surviving premie was just 19 weeks. So, even if 9,999 out of 10,000, that is still one set of parents, one new life, that got to live, that got a chance. I am so sad when I see stories about hospitals that refuse care to infants born before 24 weeks, or 25 weeks, or 23 weeks. it doesn’t matter. If the baby is alive when it leaves the womb the medical team should do anything and everything possible to retain that life. I know, that if I had a premie born at 24 weeks I know that odds are against us, I know that I probably would see them die. But I also would want everything to be done so that I could bury my baby knowing that I, as a parent and caregiver, had given my baby every chance at a life. And I would hope that every doctor and nurse that cared for him would feel the same. I totally agree, however, that the mainstream media is trivializing the dangers and struggles and likely outcome that these premies face, and that makes them at least partially to blame for all of the shell-shocked parents who didn’t know their premie would have the odds stacked against them. When my son (not a premie) and I were in the NICU I heard mothers say things like “that one family had 7 kids, all premie, and look how they are doing”. They didn’t have a realistic expectation of the road ahead as they stared down at their tiny infant.
realityrounds said
Jessica,
NICU work is difficult.
Thanks so much for your input. I really like to hear from parents who had to face the NICU. Hospitals in the United States routinely resuscitate infants at 23-24 weeks gestation. I am not sure if you are referring to hospitals outside of the US, like the Netherlands, which have a higher gestational age for routine resuscitation ( I think it is 26 weeks, but not 100% sure). In my experience, every hospital I have worked at has erred on the side of aggression in resuscitating micro-preemies, especially those with unsure dates. (I will probably get flamed for saying this, like “how could you resuscitate obviously extremely premature infants when the outcomes are so poor.” but I am getting used to being flamed on both sides of the coin
I have not heard of a 19 week infant surviving outside of the womb. Can you send me the info? The earliest I have heard of is a 21 4/7 week infant in Florida surviving (although there is debate about her actual gestational vs. conception age. I won’t get into that). There are certain gestational ages where we just do not have the technology to even attempt to resuscitate. There are not endotracheal tubes, or laryngoscope blades small enough to intubate the trachea. Currently we do not have the ventilator technology to ventilate and oxygenate the lungs of an infant so underdeveloped.
An infant loss is arguably the hardest thing anyone will ever have to go through. Hands down. As a NICU nurse I would certainly fight like the dickens to help your 24 or even 23 weeker survive. After that gestational age however, I feel like what we do to save a life is actually doing more harm. (*First do no harm*). We are causing infants an extreme amount of pain and suffering with our invasive interventions, and the research shows it has proven no benefit. As a NICU nurse it is really disheartening to see research that shows what we have been doing for the last 10 years in terms of the extremely premature has not helped, or improved the lives of families one bit. It is very disheartening.
Thanks for your input Jessica, I value it more than you know!
Donna a said
Having had one preemie and one full term you know the numbers but are still unsure at what
point you really would stop fighting. I was lucky (?) in that my full term child was 2nd. I knew what could happen. I had a plan. Would I be able to really follow through on not supporting a child “calculated” as < 24 weeks? No. Why? Because dd1 was small for gestational age…. Does anyone know for sure of the conception date? Very few with 100% accuracy. But I had a plan. At least it was a start…a plan a way to make ME feel better at the time for a high risk pregnancy it was all I had. Hope.
cccf said
Please see cccf.wordpress.com for articles on U.K. EpiCure Studies and U.S. Studies at 17 University Hospitals regarding survivability of extremely preterm Infants…very different statistics than those quoted in your summary of the Johns Hopkins Study. The discrepancy needs further research. Juan O’Callahan