Ok,
So as most of you know I have taken a break from The Preemie Experiment for the last couple months. I was personalizing things, being sensitive, oh, and going against the grain and being thankful my kids are alive...sorry low blow, but come on I told you all I got bored awake by myself and was raising hell! Anyway, the kids went to bed early and I had been alerted to the recent post by a fellow reader of TPE and was asked my opinion.
The post is entitled "First do no harm" and in it the author asks what the Dr's code "first do no harm" means when it comes to neonatology. So she writes, "Are they only resuscitating very early preemies because the parents request it? Are they all offering comfort care? Do they feel they are doing the right thing? Are they driven by fame (wanting to save the most or the earliest)? Are they driven by money? The God complex? The baby Doe laws?"
I don't think it's all such a mystery. And this was my comment (appropriate and hopefully not too controversial, although HH is on a research quoting spree, so who knows how this one will pan out...
I took a little respite from this blog but since I have twin very early preemies, and have often expressed my positive attitude toward neonatology, I was alerted to this post by a fellow blogger.
In our case we were CLEARLY given the option to chose resuscitation or not should we deliver that week (I went in to L&D at 23.2 weeks.) We were given a NICU consult and presented the option to resuscitate or not BEFORE delivery was imminent.
We were clearly told that some people choose not to initiate medical intervention to save their baby/ies because of the high mortality and morbitity rates. We were also told some people do choose resuscitation at 23 weeks, and some decide to discontinue care, while others decide to continue; and this was dependent on how the individual infant did in the NICU.
Although I didn't want to believe I would deliver that week, I did hear how devastating delivery at 23 weeks would be. I felt the neo was honest, and yet not completely doom and gloom.
Once in the NICU, it was CLEAR to me that every neo (yes we met with them all at one time or another in the 122 day stay) cared about the long term outcome of these extremely preterm infants. The developmental specialsit also cared deeply, and currently follows the twins in NICU follow-up clinic.
We had family meetings, I asked a lot of questions and participated in daily rounds with the neos and NPs. There was never a "conspiracy" to hide the truth from us. We had two very critically ill children, whose extreme prematurity would result in long term issues, although those issues could not be predicted during their NICU stay.
I believe that because our NICU was family-centered at its core, *most* families had an *easier* time understanding the implications of their decisions and their options, which many times at 23 weeks included discontinuing care; an option we were presented with, and seriously contemplated early into our 122 day stay.
I have shared the story here before of our fellow "pod family" who were strongly persuaded to end care for their very preterm, very critically ill, baby. I witnessed time and time again them try and have conversations with this family about how futile their efforts were, and were finally able to have the family consent to a DNR.
So, I really do believe there are NICUs and neos who truly care about quality of life, and will honor a family's decision for the extremely preterm or dying infant.
If every single extremely preterm infant had a life filled with suffering, I do not believe resuscitation of these infants would be permitted. Clearly there are children who have a good quality of life. I believe this is a reason neos save these babies. In our case, there is NOTHING evident that would make us second guess our decision to resuscitate and continue care. What's most important to us is they are not living a life of suffering, (although of course we are very happy that they are meeting their milestones!) There is nothing about their health or development that we believe would warrant them not to be alive. I believe neos know this to be true for families and this is why they resuscitate these babies.
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Am I the only one who had a good experience with neonatologists? Am I the only one who believes many neos care about their patients and the families and want people to go home with babies who will be loved and do well? Was everyone else lied to about the long term outcomes and forced to learn about it as it came or read about it in blogs? We were told the long term outcomes sooo many times, I finally striaght out told people, "we are aware of the possibilities in the future and have talked at length about parenting children with disabilities, but these are our children and we love them. You are doing a great job at telling us the truth here, so thanks for the info but please spread the word that we are informed and are very ok with our decision."
So give me your feedback. Let me know how you feel about neonatology and what the neos did for your children. Let me know if you think they did a good job explaining resuscitation/continuing/discontinuing care.
Thanks guys!
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12 comments:
As you know My son and I were in the same NICU as you. My son also was born very early (24 weeks) He went into full caridac arrest and we were give the oppotunity to DC all life saving efforts. We were told all facts of what could happen, the neo's were EXCELLENT with facts in our NICU. I too sat through rounds every day of our 103 days and never once felkt like anything was being hidden from me. I completely feel that I was told all possibilities with what could come of my son if I continued care. And like you there is nothing in his life that would make me think he would have been better off if I DC'd life support. Actually for a 24 weeker Bryce is doing VERY well. He didn't even come home on Oxygen. (although he's on it now) He is a total joy in my life and can't imagine it with out him. And thanks to everyone in the NICU I have a happy pretty much healthy baby. The issues he does have could happen to any baby full term or not. I thank god every day for the neos and all the NICU staff because with out them my son wouldn't be here. And it was 100% our decision to continue life saving care in the NICU.
We had the same experience as you in our NICU as did all of our fellow IRL micro preemies. I have the utmost respect for the neonatologists who cared for my son and daughter. They did everything within their power to ensure not only life but quality of life. They never over stepped their bounds, hid the truth, or had an overly optimistic or pessimistic outlook on my children's lives. If anything we're experiencing more trouble with doctors being dishonest and glossing over the truth NOW than we did in the NICU.
When my wife an I were admitted to the hospital, the doctor told us that 1 in 3 kids born that early survive to leave the NICU and of those, fewer than 1 in 10 don't have some serious handicap or disability. The neonatologist made it very clear that our chances of having a normal baby were practically nil. They were very honest with us, but they did say that babies born at 23/2 have a chance to live. After he was born, the doctors would say that he was stable, but that he had to face hurdle X and he might not clear that hurdle.
I am grateful that he cleared all of his hurdles, but during the 4 months in the hospital, we saw too many babies who didn't. Our hospital was totally upfront and honest. The odds were against us and there was only so much they could do. In the end, they let us make the choice. If anyone tries to tell you what decision to make when confronted with that choice - ignore them. That decision belongs to the parents alone.
We were given honest, very candid information. Never for one second did I think that the neos did not have the utmost respect for us and our children. They also truly showed they cared.
I cannot imagine where we would be without the wonderful staff in our NICU. We grew to love the staff, and they all mourned with us when we lost Logan.
Our situation was way different. We were visted by a neonatologist who came in and gave me some percentage of Emery having a disability such as eye glasses or mental retardation. I was never allowed to ask questions and I spent my stay in the hospital before and during delivery in complete ignorance. Much of this was due to my critical condition. My doctor had removed all visitors and so the only people asking questions were my husband and my mother, and nothing was ever conveyed to me. All of what I learned early on was through TPE and various blogs. But I started asking the neos questions. The only one who really spent any time explaining any future to me was our primary followup neonatologist that we still see every 6 weeks. He was always honest. No one ever gave us the option of not resuscitating. Much of this is because I have that proverbial 26-weeker that seems to be the 'magical number,' and yet Emery is clearly developmentally and physiologically delayed more than Edwin Jr., who was born 3 weeks gestationally behind him.
And yet, I still love every singe one of the neos that treated Emery, even the ones I didn't like in the beginning. It turns out, each and every one of them was rooting for Emery. They still check on him, and they have cried with joy to see how well he's doing.
The U of I has an extremely comprehensive long-term followup for preemies. Emery will be a part of this followup until he ages out at 21 (if he makes it to 21). That's another thing. Basically, one day last February, a kind doctor sat down and explained everything to me about prematurity and Emery's situation. No one, under any circumstance, can predict anything about Emery's future. We were told he might not live an adult-aged life.
Even as ignorant as I was of any and all details regarding prematurity, I'm still not angry or hurt with neonatology. Would I be in the midst of a severe disability.. maybe. How can I say what I would or wouldn't be without facing the situation first?
The main reason I'm not angry with neonatology is that they were simply doing their job, a job I wanted them to do. A job I fully expected them to do. I was blindsided by prematurity, and I had a very sick premature baby... still do, and yet I don't regret it.
We were told from the moment I went into early labor before I was ever transferred to a hospital w/a NICU that there were "possibilities" of a not so good outcome when a baby is born early. When I made it to Dallas, the 2 days that I was there was really a blur, but once I delivered Kellar and was able to go in and see him I was immediately met by NP's, the DR and several nurses. They never sugar coated what life could bring when raising a preemie, they were very honest w/me. When given the severity of Kellars brain bleeds I was told that Joey and I could take lunch, discuss what we wanted to do regarding Kellar, but for me there was no discussing anything, if it was Gods will that he come home w/us he would, I already loved Kellar w/every thing that I had in me and then some. There was no sugar coating anything in Dallas, they told me a lot of things that were hard to swallow, somedays I felt like I had been punched in the gut but they were honest, I had enough info to make a informed decision whether or not I was "strong" enough to tackle his prematurity issues head on. I am very thankful for the neo's at Baylor, but more than that I am thankful for answered prayers!!!
The majority of moms I've talked to were well aware of the hardships to come - they were well informed by the staff.
I just have to keep in mind that medicine is constantly changing and what was the 'norm' 8 years ago is not the norm now (multiple steroids use for instance) - for those that were affected by this to assume everyones experience was the same as theirs was is wrong. I chuckle when I see studies posted from 20 and 30 years ago... please.
We had the same experience as you, Stephanie. We were told by the neonatalogists about all of the possibilities, with a definite stress on the negative outcomes of most babies born prior to 24 weeks (after 24 weeks, we would not have had a choice about resuscitation, and they presented our 23 week status as a godsend to us in that respect), we were counseled to provide comfort care before the girls were born, and after both of them started going down hill, we were encouraged to sign DNRs. And, as you know, we lost one of our twins during this battle and were counseled not to pursue heroic efforts to save her given everything that was going on. We also witnessed firsthand several similar conversations that the docs had with other parents whose micropreemies (24-26 weekers) who were doing quite poorly. At the same time, our doctors were always compassionate and always forthcoming and we believe that Hallie is doing so well (beyond any of their expectations, really) because of the treatment that she received from them.
In other words, we are a textbook case for the precise opposite of what Helen Harrison and her ilk have concluded about the field of Neonatology.
We're another Baylor family and we feel we were given a pretty balanced view of things. I started meeting with the perinatologists at 16 weeks and they began the micropreemie talks immediately. IF we got to 23 weeks, these were the stats and risks. Prior to 25 weeks they did not pursue aggressive treatment unless the parents requested it. We had weeks of talks with the peri and neos (I was admitted on bedrest to the hospital at 22 weeks so I got multiple visits a day!) and they sent the chaplain in numerous times to counsel with us, give reading materials on our options and the idea of comfort care, suggest we meet with our religious leaders to help us decide. They addressed not just the immediate medical issues and stats but the long term disabilities, the pain Bennett would face, the spiritual aspect of things. Throughout our NICU stay the social worker and family care coordinator constantly checked in on us, answering questions and attending family meetings with us. The neos would sit with us and go through every question we had and then ask if we had more, until we ran out of questions.
Bennett's doctor now is the same one that discharged him from the NICU, supervising the NICU graduate clinic at the hospital He emails us studies about long term impacts of prematurity and meets with us over anything and everything we may have concerns about. He's talked with us about various outcomes they are seeing through college age, not just these early years.
So our experience has been overwhelmingly positive with our doctors - both my peris and Bennett's neos. If anything, they painted a VERY bleak picture for us of outcomes for 23 week boys. We were told worst case scenario over and over and over, which makes pretty much anything better seem like a bonus.
Sorry, me again... when I was living at the hospital on bedrest the neo and my doc would come in each day for our little chats and then before leaving confirm our choice for aggressive treatment if I went into labor - all the while reminding me that if I did not get to 23 weeks then we would provide only comfort care. On Friday the neo came in, we talked, and he said, "You are 23 weeks tomorrow. If you go into labor at midnight tonight, do you want us to resuscitate?" and I said yes. It was probably the hundredth time they had asked and I confirmed but what I remember was how he sighed. And it was only in hindsight that I thought about it, because they had always seemed to be very professional and impartial about it our choice. But that time, he sighed and I later realized how much he was probably dreading that possibility...
I went into labor the next day, we couldn't stop it and Bennett arrived just past that 23 week deadline. We had an interesting conversation with his primary nurse months later as we prepared to go home - apparently that neo that gave me the talk had been coming in to check up on our son consistently over the four month stay, though he was not assigned to him. He told her how concerned he was, how much he had been cheering for our son, and how happy he was to see how things had progressed...
I felt he truly cared, and he was one of many that we grew to respect and appreciate because of experiences like that.
Thank you ALL for sharing! I think sharing experiences is valuable because it shows us the ideal way in which NICU and neonatologists should repond to families, espcially in the cases of very premature, very critically ill babies.
I am sorry I tried to catch up on all of this NICU stuff, but there is so much. Sorry if I do not answer the right questions. At the hospital where my children were born they were definitely very honest and up front with what could or did happen. One Dr. was sympathetic the other was just very up front about it. When the brain scans came back, we made the decision to discontinue care on Colin and Courtney. My heart still aches to this day about this. It just happens all so fast. They both had severe grade IV bleeds with hydrophelus. Their brains were "devastated" and "destroyed" is what we were told. My daughter had a huge pocket of blood forming under her chin and my son was so white even with the 3+ blood transfusions a day. So, I believe them and am grateful for their honesty.
My other son, Jaxon, was transferred to another hospital on day 11 and died there on day 89. I have mixed emotions about this hospital. In all honesty I think he should still be alive, but because of some things done or not done there he is not. He contracted a fungal infection in his ET tube (aureo basidium) that he just could not fight. He was on antibiotics for it for over 40 straight days. This hospital was very dirty, nurses didn't properly scrub up, etc. Towards the end when Jaxon was on a pace maker, a million IVs, etc...his primary nurse very sweetly helped me to let him go. The doctors were not so helpful...there were just too many coming in and out. They didn't know much on my baby and would often tell my "x" would happen later on, when in reality "x" already happened hours ago. I hated that place. My future children will never go there, NEVER.
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