Comments on: New NICU Research

By: cccf

cccf — Sun, 31 Jan 2010 00:46:47 +0000

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

By: Donna a

Donna a — Tue, 20 Oct 2009 15:19:00 +0000

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.

By: realityrounds

realityrounds — Fri, 09 Oct 2009 23:11:11 +0000

Jessica,
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 NICU work is difficult.

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!

By: Jessica

Jessica — Fri, 09 Oct 2009 21:27:21 +0000

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.

By: realityrounds

realityrounds — Fri, 09 Oct 2009 13:52:42 +0000

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.

By: midwest woman

midwest woman — Fri, 09 Oct 2009 13:47:49 +0000

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.

By: SW

SW — Fri, 09 Oct 2009 04:27:40 +0000

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.

By: pinky

pinky — Thu, 08 Oct 2009 22:40:28 +0000

You make some good arguments Kathy. It is hard to see the wee little ones suffer when their odds are so damn poor.

By: Valerie

Valerie — Thu, 08 Oct 2009 02:04:04 +0000

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.

By: Akiko

Akiko — Wed, 07 Oct 2009 19:48:00 +0000

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.