Awhile back I posted on how upset I was over a comment made about preemie mom blogs. That's such an abbreviated summary of that, but you all remember I'm sure. Anyway, Breech Mama commented on that post and said she was writing on resuscitation. I figured there would be a good place to get my opinions out without the drama associated with the other blog. The computer was having difficulties so it took a little while to show the comments, but eventually they came up.
Basically, my point has been reiterated time and time again about my feelings on resuscitation. However, I feel compelled to stand up to this statement made by Buddhsit Mama in response to HH's comment on the negative affects of NICU treatment.
I have a problem with this statement:
"Many of the parents who have already made the decision to resuscitate at less than 26 weeks and may face poor outcomes are unwilling or unable to look closely at these facts."
Why are we always accused of being oblivious to our own realities?!? And why are we "unwilling to look closely at these facts" because we disagree that our children would be better off dead...or in more neutral terms, we disagree that it would have been better if we opted not to resuscitate?!?
Anyway, here's my response:
***
Buddhist Mama,
I respectfully disagree with your statement:
Many of the parents who have already made the decision to resuscitate at less than 26 weeks and may face poor outcomes are unwilling or unable to look closely at these facts.
I for one am neither unwilling nor unable to look at these facts. These facts were not given in any type of detail or coherent manner when I was in labor at 23.2. There would have been no way to grasp all of this in the state I was in. Now that my decision has been made, my love for my children makes it impossible for me to say I wish I didn't make the decision I did. This does not mean I turn a blind eye to the realities of the treatment they underwent, nor the difficulties they will likely face long term. I am not unwilling nor unable to recognize the trauma that my children went through with intensive NICU treatment; I was there, I lived that reality right along side them. As much as I was more informed than other parents, was I prepared for the NICU? Hell no I wasn't prepared for it. Does this mean I regret my decision and wish my children were dead? No. The love I feel for my children makes it impossible for me to look at statistics and research and wish I had a made another choice. I cannot imagine life without them, and truly believe they deserve to be here.
What it does make me feel is a strong desire for parents to be educated about prematurity and treatment, and to have the information they NEED to make a decision they feel good about. There will always be parents who cannot opt for death regardless of outcomes. The extreme example is pregnant women who know there is something very wrong with their fetus and still opt to carry that child, even if death is inevitable at birth. There will always be parents who opt to utilize the medicine that is available to save their child's life. There will always be parents who believe the price is too high to pay. Either way, those who have made a choice to resuscitate may be very capable of ingesting facts about treatment and outcomes, but who believe their children's lives have value and are forever thankful they made the choice they did. As I'm sure parents who opted not to resuscitate feel when they read facts and feel they saved their child from a terrible existence. After all, I believe one who opted not to save their child would have to believe that their child's life would have been miserable, how else could they live with their decision?
I just have a hard time understanding why parents who opted to save their children are always accused of being naive or "sticking their heads in the sand." We live the realities of our children's lives. Those with motor delays, SPD, eating issues, shunt malfunctions, etc etc, that's right in a parent's face every day of their lives. The affects the vent has had on my son's lungs is evident every time I check his O2 tank and replace his nasal cannula. Every time I give him a puff or he needs steroids for his cold, I'm reminded. Every time my daughter says "ma ma," I hear the affects of her paralyzed vocal cord from her PDA ligation. But every day they smile at me and crawl over to me and reach to be picked up I'm reminded how close I came to never having that experience. Every night I tuck them in and tell them how much I love them I remember the nights I did that in the NICU and wondered if they'd live to see the next day. Yes these children face monstrous obstacles as a result of their prematurity and treatment, please believe many of us are aware of these things and yet still find it in our hearts to love and live by our decisions. And trust me, for me, that is an extremely easy thing to do.
****
I am I crazy or are some people unable to understand that some parents are very capable of loving a child with medical and special needs? Is it so awful that we chose life, even when it took a lot of pain to help that child survive? Do we withhold chemotherapy for children with cancer because it's painful and has side effects? I get it, NICU treatments are often experimental and can have varying long term side effects. Okay, well my other option was my kids were going to die, and sorry if I couldn't consent to that. I didn't try mystical witch medicine to treat my kids. I was at a NICU with a medical staff who treated my premature children. I trusted their expertise and believe they did right by my children. I don't agree Serena and Edwin would be better off dead even knowing the "facts," and this does not make me naive, stupid, or "unwilling to look closely at anything." I look closely at their beautiful faces, and I'll look closely at those for as long as I live.
Ok I'm done venting. Surprisingly I'm not angry this time, just frustrated. I'm frustrated that it is so hard for some to understand why we chose life for our kids, and why we are thankful for their survival.
Please make sure you look at the pics of the kids in the previous post...I hate to take away from those, but this blog is my therapy and I had to address these things tonight.
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15 comments:
Stephanie:
Thanks for your post. I, too, want more education for parents possibly facing a premature birth. I have been mostly an observer of these "dialogues" because I think we as parents all have the right to our thoughtful opinions on the topic.
Thank you for addressing something I continue to see in these exchanges. The idea that anybody who chooses resuscitation below a certain g.a. must "have their head in the sand" is disturbing to me. My son was a 28 weeker (the size of most 24 weekers, though). I spent 4 weeks on bedrest and was given much information on outcomes, resuscitation, disability, etc.
I think what might be happening here is that some of the people on the "nothing below 26 weeks" side somehow feel better if anyone on the other side is dismissed as uninformed or "head in the sand." I think it is unfortunate that they need to be patronizing instead of just allowing you your viewpoint.
Lori
I too am amazed at the number of people (nurses especially) who say that if they went into labor before 26 weeks, they would not resuscitate. I understand the risks, but if I hadn't chosen resuscitation, I would have torchered myself for the rest of my life wondering 'what if.' Olivia has come through with flying colors. . .how could I not have given her that chance? I, of course, had no warning (at 23.1 weeks)and I remember going into shock with my husband crying and the doctors trying to convince me not to save my babies. I loved them already. . .I tried for over 2.5 years to have them. . .I would do everything in my power to make sure that their life is one of happiness and comfort. . .I loved them regardless. I remember giving birth to Olivia and she was wriggling around. How do you not help her? My son lived for 1 month, but it was God's decision to call him home. . .not mine.
I, too, do not have my head in the sand. And when I stand at the pearly gates someday, I feel confident that I will be able to say, "God, I did everything that I could to preserve the sanctity of life."
Jodi
I had this entire thing typed out and was about to hit enter and decided to post a blog of my own in response to this...
Thanks for posting this :)
You know, I have the proverbial '26-weeker' who is worse off than many 24-weekers. I wish someone would take a gander at my blog and the issues we face.
I also don't understand. I mean, why is it okay to let a 24-weeker pass without treatment, but allowing a child with Down's syndrome to be born, who will need special medical treatment and care after birth? I watched a lot of term kids born with serious side effects while were in the NICU. Most of the moms knew about the defects and chose to carry on to deliver. Some of those babies died. Should they have chosen to terminate the pregnancy because the baby had defects?
Oh, and I was one of those moms who was told virtually nothing about prematurity, the long-term complications, the treatments.. literally. I even had 3 days in the hospital receiving steroids and had many visits from NICU staff, social services, research nurses, Medicare specialists.. the works, and only once was long-term disability mentioned in a conversation that consisted of "he has an 88% chance survival rate and can disabilities ranging anywhere from glasses to cerebral palsy." Then, the doc left and my mother and my husband signed consents as I was too ill at that point to make any decisions. It didn't matter anyway. I researched after he was born and knew what I would be facing.
But the fact is, not one of us who chose to resuscitate and is okay with the decision will ever change the opinion of those who wished they hadn't.
I agree with everything your post says, Stephanie (but of course you know this already from my previous responses). We were fully informed about what might happen, we did not then and do not now have our head in the sand, we are aware of the risks not only from lists of statistics but from some of the stuff we go through daily, we have it better than many others and worse than many others, and we would do the same thing again. What we would not do again is let our OB convince us that a twin IVF pregnancy is not a high risk pregnancy and we wish that we understood more about what the signs of preterm labor were up front. And should we be crazy or lucky enough to have a second pregnancy, we will have to think carefully about what we do if Sharon goes into labor that early (23 weeks or before, God forbid) since that decision will impact Hallie and not just us. But in principle deciding that every baby before 26 weeks doesn't deserve a chance at life, well that one makes no sense at all. As Sarah and Lori said, there are 26 or 28 -- and even 35 -- weekers who do worse than 23 weekers; statistics tell you nothing about individual cases. I think that it's better (though certainly not foolproof) to see how the child presents him or herself and how he or she does during those crucial first weeks. Even then it's hard to say that enough is enough; I know this because I lived this.
I am a mom of a 35wker who has had multiple issues. Maybe not "significan" to some, as he doesn't have a g/j tube, he is not O2 dependant, etc. That being said, my son has had multiple issues and illnesses, is proverbially sick, and he was a 35weeker. IT doesn't matter the gestation. What matters is the child, and every one is different. Sam is the love of my life, I can't imagine what I would do without him. As a parent whether full term or not, we should applaud each other for loving our children unconditionally and wanting them to succeed in every way they possibly can. Statistics don't say my 35wk will have chronic issues, but he does, statistics don't say that my 35wker would have been significantly delayed with physical progress or speech or feedings. But he is, does that change anything? No, I love him, and want whats best for him. Would he have had these issues if he was a 23wker, if he was full term? Who knows, but what I do know is that no one has the right to say anything to a parent who chooses to give their child every possible opportunity available. Each child is a blessing, and we should be encouraging each other in the trials of being a parent, not accusing people of being uneducated in the decision to give their child a chance.
Stephanie, I know exactly what you are saying and where you are coming from. I was not told until about a week after Ashton was born about ANY complications that might arise from his birth at 24 weeks. However even when we found out we still wanted to do everything for him. And I am so glad that we did because he brings so much joy to my life and everyone who loves him!
I agree with you and wish I could be as eloquent about explaining it :)
I don't think its right of either side to chastise the other for a decision they may make, everyone makes this decision for themselves and do not have to justify it to anyone - I've given up trying to do that.
Stephanie,
I know you are frustrated. You have every right to feel that you made the right choice about your situation. And for you, you did. I read The Preemie Experiment quite frequently and found your blog from there. I have two children. My first was born full term. My second was born at 28 weeks, but I had an abruption at 23 weeks.
When I read any of these "discussions" what I am amazed at is the absolute lack of listening either "side" does. You are very quick to get defensive when anyone talks about their choice not to resuscitate if they had a child below 26 weeks.
What I hear from both "sides" is parental choice and education is a must. I think you have a lot more in common with these women you get angry with. You want choice, respect, validation, and education for expectant moms.
If you are confident with your choice, don't get defensive.
Good luck,
Carrie
Carrie,
First of all, I'm not defensive about my choice. This is my blog and I chose to address issues that I find interesting, moving, controversial, etc.
I am directly disagreeing with the insinuation that those who resuscitate below 26 weeks are "unable or unwilling to look at facts." That's what this post is about. This isn't about why my choice was the right choice. It's about the constant accusation that we live in a fantasy world because we don't REGRET our decisions. This same accusation was made by micro mom, quoted in a previous post here, and the straw that broke the camel's back about why I no longer address these type of people on TPE.
And for the record I think I do a good job listening to the "other side." I frequently admitted on TPE that I understood WHY some parents opt not to resuscitate. It took a lot to get there, which I was also very open about. I even apologized for saying it was not unconditional love that parents opted not to resuscitate, because I can think of situations where parents used unconditional love not to resuscitate. The "other side" has NEVER apologized, even when using phrases like "damaged fetuses that nature intended to be aborted" to refer to micro preemies.
If you read my comment on Breech Mama you'll understand why I don't think it's so easy to say the decision not to resuscitate is an individual's choice and it shouldn't affect onlookers. Either way, I don't get involved with conversations on TPE anymore, and opt to use this space, my space, to address issues that frustrate me. This particular post is not about the decision to resuscitate or not, it is about the assumption that those of us who are thankful for our choice to have our children alive with us somehow are unable or unwilling to face the facts that Helen quotes about NICU treatment and outcomes. We ARE the statistics, we live the reality, we are neither unable nor unwilling to face the realities of OUR lives.
That was the thesis of this post.
Here is my response:
My wife and I were admitted to the hospital 10 days before birth. During that time, we did not meet a single physician in any of the 3 hospitals we stayed that thought we would make it. Of the few who thought we would make it to 23 weeks, they all made it very clear that the odds of the baby surviving the NICU were one in three. Of those that survive fewer than one in 10 do so without disabilities. That means a less than a percent chance of a normal baby. We had 10 days to think about that decision. How much time have you spent thinking about what I should do with my son's life?
Kudos Mama. My Joel was a 25 weeker who was the size of a 21 weeker. He'd been without a substantial amount of amniotic fluid since 19 weeks gestation and had a necroctic placenta. Statistics were so stacked against him, it was ridiculous. We had plenty of time to consider the ramifications of resuscitation and felt that we owed it to him to at least give him a chance. He'd fought so hard already, his life was precious and it was our job to preserve it. Our love for him wasn't based on whether or not he would be able to return that love some day, but on the fact that he was ours.
Our decision wasn't made in ignorance or out of selfishness, but as an act of love.
I appreciate your insight..
I totaly agree with you!!! If every person listened to what the Dr's said then there would eb no little preemies here today. God is in control and he chooses life not any person not any Dr. We were told that Caitlin would possibly be blind, not be able to walk,talk any of those things and Caitlin has surpassed so many obsticles we are truely blessed. Caitlin of course had ROP and had to have surgery but her eyes are great now her hearing is great she walks just fine and is singing and talking and is about to turn 2
I know everyone has thier own opion about life but that is exactly what it is is our each and own opion. I don't think that the people who choose to see just what would happen if they decided to save our baby's life should be made to feel bad. If I would have listen to what I should have done(like terminate my whole pregnancy) I would have not been the same person I am today. I value life so much more now I relize to look at all the positve stuff and not dwell on the negatives.Also through this my relationship stregthend through God so way to go with your blog post. I just thought I would comment as well just to back you up!!!!!!!P.S for being 23 weekers I think that your babies are doing exceptionally well. They are happy beautiful babies that are feeled with so much love and have touched so many hearts and minds. They are worth everything and they complete you guys. everything that they go through will be their testimony that shows God is in control and look at all the miricles he does for them. they just might be our future presidents or GREAT Dr's!!!!!!
I would like to clarify, as I have in my comments on my blog Breechmama recently. I have never ever said or even implied that "deciding that every baby before 26 weeks doesn't deserve a chance at life." This makes NO sense to me either, so I agree with 23 w/twins and others who have said as much in the comments.
What I did state, was a decision that I came to during my second pregnancy about a resuscitation limit of 26 weeks. Yet, to clarify, I did not and would not have been able to make that decision during my first pregnancy. This is why I can respect and honor a parent's decision NOT to set rescucitation limits---I didn't either the first time around. But having had 26 week twins and knowing that I want to be there for them as well as for the child that I am having, I made a decision. This was a personal decision, based on our family's constellation of resources and so forth.
Others might choose differently, and I respect those choices. I simply do not appreciate being told that people like me "should not bear children."
That seems callous, unfounded, and solipsistic. There are many kinds of sufffering on this planet that need our care and compassion, beyond our children, I might add. Why shouldn't someone who has resuscitation limits have children? Is it because they threaten your decision....
I'd just like to quickly clarify. This post is NOT about me addressing resuscitation limits. Rather, it was addressing a particular comment that I disagreed with.
As for someone's opinion that those who make resuscitation limitations should not bear children...I suppose that is someone's opinion in the same respect that it is someone else's opinion that they'd not resuscitate before a certain gestation.
But just to clarify...it is not something I've ever said about Buddhist Mama nor anyone else with resuscitation limitations. It was posted on BM's blog by an annonymous commentor, and frankly has nothing to do with my blog.
Just wanted to clarify that.
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