Comments on: Who Should Decide the Survivability of Newborns? http://brainblogger.com/2009/06/06/who-should-decide-the-survivability-of-newborns/ Topics from multidimensional biopsychosocial perspectives. Sun, 21 Mar 2010 18:01:13 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: Jeffhttp://brainblogger.com/2009/06/06/who-should-decide-the-survivability-of-newborns/#comment-597042 Jeff Thu, 19 Nov 2009 04:18:51 +0000 http://brainblogger.com/?p=2781#comment-597042 When given time prior to birth, I sit down and talk to the parents in plain English. We cover all the basics, what are the odds the child will ever walk, talk , eat, or pee and poop on their own. Then we talk about vision problems in terms of reading or even seeing and breathing issues. I will only cover diagnosis such as Intraventicular hemorrhage (bleeding in the brain) if the parents bring up the subject. And even when the information is put in plain English, the parents are ill prepared to make such a monumental decision on their own, so in my opinion it needs to be the Parents as well as the staff who together make the choice. When given time prior to birth, I sit down and talk to the parents in plain English. We cover all the basics, what are the odds the child will ever walk, talk , eat, or pee and poop on their own. Then we talk about vision problems in terms of reading or even seeing and breathing issues. I will only cover diagnosis such as Intraventicular hemorrhage (bleeding in the brain) if the parents bring up the subject. And even when the information is put in plain English, the parents are ill prepared to make such a monumental decision on their own, so in my opinion it needs to be the Parents as well as the staff who together make the choice.

]]> By: Shaheen E Lakhan, MS, MEd, PhDhttp://brainblogger.com/2009/06/06/who-should-decide-the-survivability-of-newborns/#comment-550507 Shaheen E Lakhan, MS, MEd, PhD Sun, 21 Jun 2009 04:27:57 +0000 http://brainblogger.com/?p=2781#comment-550507 There is an active discussion concerning this blog post at http://allnurses.com/nursing-news/who-should-decide-398474.htmlHere is just <a href="http://allnurses.com/nursing-news/who-should-decide-398474.html#post3670690" rel="nofollow">one great comment</a>:<blockquote>It is indeed a difficult question and one that can not have a vague or generalized answer. Each case has to be treated individually. The parents experience, education and overall expectations are a huge consideration. While we can indeed save a 24 weeker, the overall chances of it having no long-term complications are slim. So while it's possible to save this child are the parents able to deal with the stress and immense financial concerns of life-long therapy, doctor visits, hospitalizations and more? A telling paragraph in the article is: "Most physicians are comfortable discussing clinical issues with parents, but far fewer are comfortable discussing quality-of-life issues, expected long-term outcomes, or parental preferences."I've had 3 preemies. My first child, a 32 weeker, I would have adamantly argued with any parent who thought we should not attempt to save a 24 weeker. Every life is precious, every life should have a chance to be saved. Though she was on a vent for only 3 days and had some developmental delays she's okay now. My next daughter reaffirmed this belief when she was a 36 weeker with no problems.Then I had my son at 27 weeks becaues of HELLP syndrome, who was born at 1 lb. 11 oz. with brain bleeds, 3 months on an oscillator, pulmonary hypertension, 6 weeks of nitric, tube fed, so on and so forth the list is too long. I thought I was prepared for this. I had experience with prematurity. It turned out to be so far from the truth. With all my son's complications my full-time job is Dr. appointments, surgeries, specialists, therapists, nurses and more. I don't know what the future holds for my son. He is severely delayed and while he's my whole world I wonder at what cost it is coming to my other 2 children. I wonder if all the invasive tests he experiences are going to help his quality of life at all. This month, with no exaggeration, we have 18 appointments at 16 different doctors and therapists.I had no idea. No one in the NICU informed me of the complications. The life-long therapy and how absolutely life changing this would be. Vacations, a date night with my husband, being able to ever again have an 8 hour night of sleep... all in the past and my son is 2 years old. I mistakenly assumed, as was my experience with my 32 weeker, that once we were out of the NICU besides a few more Dr. appointments the preemie experience was over. None of my son's Doctors, NNP's, nurses or anyone else commented on what would happen once we were home.While I lay in the hospital for a week knowing we were headed toward a premature birth not a single doctor mentioned what I may have been in store for bringing my child home. While I am extremely grateful for all they did for my son and myself... I got the distinct impression that they have absolutely no focus or consideration for once that mom and child are sent home. It's turned over into someone else's hands. Before any decisions on survivability of newborns and who's hands the decision rests in can be answered, the doctors and nurses MUST do a better job of informing parents not just what complications may lay in store for these babies in the hospital but what the life-long implications will be.I'm not saying I would have made the decision to not save my son, since he was 760 grams and at 27 weeks the odds were with him. But if having 2 previous children, and premature at that, I wasn't even aware of these issues how could another parent POSSIBLY be able to consider and make any informed decision? Seeing a few preemies of parents I grew close to in our months and months in the NICU pass away was a heart-wrenching life lesson as I heard the phrase "there are worse things then death" repeated more then a few times. All the power lies in the Doctors hands right now as the vast majority of parents absolutely can not comprehend what decision they are making. And sadly, it's only the parents who have to live with the decision as the Doctors role ends when the child is discharged.</blockquote> There is an active discussion concerning this blog post at http://allnurses.com/nursing-news/who-should-decide-398474.html

Here is just one great comment:

It is indeed a difficult question and one that can not have a vague or generalized answer. Each case has to be treated individually. The parents experience, education and overall expectations are a huge consideration. While we can indeed save a 24 weeker, the overall chances of it having no long-term complications are slim. So while it’s possible to save this child are the parents able to deal with the stress and immense financial concerns of life-long therapy, doctor visits, hospitalizations and more? A telling paragraph in the article is: “Most physicians are comfortable discussing clinical issues with parents, but far fewer are comfortable discussing quality-of-life issues, expected long-term outcomes, or parental preferences.”

I’ve had 3 preemies. My first child, a 32 weeker, I would have adamantly argued with any parent who thought we should not attempt to save a 24 weeker. Every life is precious, every life should have a chance to be saved. Though she was on a vent for only 3 days and had some developmental delays she’s okay now. My next daughter reaffirmed this belief when she was a 36 weeker with no problems.

Then I had my son at 27 weeks becaues of HELLP syndrome, who was born at 1 lb. 11 oz. with brain bleeds, 3 months on an oscillator, pulmonary hypertension, 6 weeks of nitric, tube fed, so on and so forth the list is too long. I thought I was prepared for this. I had experience with prematurity. It turned out to be so far from the truth. With all my son’s complications my full-time job is Dr. appointments, surgeries, specialists, therapists, nurses and more. I don’t know what the future holds for my son. He is severely delayed and while he’s my whole world I wonder at what cost it is coming to my other 2 children. I wonder if all the invasive tests he experiences are going to help his quality of life at all. This month, with no exaggeration, we have 18 appointments at 16 different doctors and therapists.

I had no idea. No one in the NICU informed me of the complications. The life-long therapy and how absolutely life changing this would be. Vacations, a date night with my husband, being able to ever again have an 8 hour night of sleep… all in the past and my son is 2 years old. I mistakenly assumed, as was my experience with my 32 weeker, that once we were out of the NICU besides a few more Dr. appointments the preemie experience was over. None of my son’s Doctors, NNP’s, nurses or anyone else commented on what would happen once we were home.

While I lay in the hospital for a week knowing we were headed toward a premature birth not a single doctor mentioned what I may have been in store for bringing my child home. While I am extremely grateful for all they did for my son and myself… I got the distinct impression that they have absolutely no focus or consideration for once that mom and child are sent home. It’s turned over into someone else’s hands. Before any decisions on survivability of newborns and who’s hands the decision rests in can be answered, the doctors and nurses MUST do a better job of informing parents not just what complications may lay in store for these babies in the hospital but what the life-long implications will be.

I’m not saying I would have made the decision to not save my son, since he was 760 grams and at 27 weeks the odds were with him. But if having 2 previous children, and premature at that, I wasn’t even aware of these issues how could another parent POSSIBLY be able to consider and make any informed decision? Seeing a few preemies of parents I grew close to in our months and months in the NICU pass away was a heart-wrenching life lesson as I heard the phrase “there are worse things then death” repeated more then a few times. All the power lies in the Doctors hands right now as the vast majority of parents absolutely can not comprehend what decision they are making. And sadly, it’s only the parents who have to live with the decision as the Doctors role ends when the child is discharged.

]]> By: lonegoldhttp://brainblogger.com/2009/06/06/who-should-decide-the-survivability-of-newborns/#comment-548838 lonegold Wed, 10 Jun 2009 02:58:29 +0000 http://brainblogger.com/?p=2781#comment-548838 As a parent and a Labor Nurse it is my firm belief that parents-to-be must be compassionately, tactfully yet fully informed about the exegencies of the gestation of their child. It is up to them to decide what is to be done for the preservation of the life of their child at whatever stage of gestation that child might be. As icky-sticky it seems at the moment such counseling will get easier as the public becomes more and more informed and as primary care givers become more practiced at it. As far as the issue of the government getting involved in what should be up to the physicians and/or the parents that has already long been the case. There was a time in this country when women couldn't get a hysterectomy (by law) without the written consent of her husband, not to mention Roe v Wade. As a parent and a Labor Nurse it is my firm belief that parents-to-be must be compassionately, tactfully yet fully informed about the exegencies of the gestation of their child. It is up to them to decide what is to be done for the preservation of the life of their child at whatever stage of gestation that child might be. As icky-sticky it seems at the moment such counseling will get easier as the public becomes more and more informed and as primary care givers become more practiced at it.
As far as the issue of the government getting involved in what should be up to the physicians and/or the parents that has already long been the case. There was a time in this country when women couldn’t get a hysterectomy (by law) without the written consent of her husband, not to mention Roe v Wade.

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