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Tuesday, January 9, 2007

Interesting and sometimes infuriating conversation on 24 weekers...

...over at Neonatal Doc.

I've been reading and re-reading (and sometimes adding in my own addled responses to) the most recent post over at NeoNatal Doc.

I highly recommend his site and the very level-headed Ex Utero (who happens to be a fabulous writer, to boot) if you are into the medical blog thing.

And, for those of you who are micropreemie parents, I urge you to add in your own two cents on this issue. It would be useful for the medical world to hear what we have to say. One of the commenters--herself a parent of a preemie who has published in the field--has suggested that it's the doctors, not the parents, who are interested in aggressively treating micropreemies because it furthers their own capacity to experiment on these kids and that, it would be in the best interests of the babies and their parents to offer comfort or hospice care to micropreemies. From personal experience, I don't find this to be the case at all and, if anything, we were much more interested in giving Hallie and Livvie a chance than some of the doctors initially were. When we made our decision, they certainly poured their heart out into saving the girls, but all along provided us with reality checks when, sadly, they were necessary.

Anyway, I'm not going to recap the post or the comment seciton--just toodle on over if this is of interest to you. And feel free to let folks know what you think.



Kim said...

I always find it interesting that people hang on the fact that some micropreemies don't "come out crying" as reason not to resuscitate. One of my 32 weekers didn't come out crying and was almost completely blue. Would those same people suggest we shouldn't have had her resuscitated?

I wish I was a little more well-researched and eloquent to post on blogs such as ND's...

abby said...

Hi Kim,

I for one think that you are pretty damned eloquent! Sharon (my partner) is always ragging on me for my (too numerous) typos in posts, etc. She's right on some level, but I chalk it up to enthusiasm. Anyway, I really lament that I never took any science beyond AP Bio in High School (college let me place out of science because of it). Were it not for that, I'd probably go back to school (and double my already mortgage-level student loans) and credentialize myself so that I could at least claim some sort of expertise (beyond a good capacity to do endless hours of research while procrastinating on the work I really need to be doing) in the preemie field!

Kim said...

The complexity of this issue makes my head spin. But, having spent some time thinking about it more since my previous post, I think that I have come to some conclusion of what *I* think is ethical. In my opinion, the parents (the majority of the time, barring any exceptionally unusual, unforseen circumstance) should have the right to decide whether or not their child will be resuscitated. The parents, not the doctors, are the ones who have spent 5+ months getting to know the child/children and are certainly best suited to advocate for their kid/kids. However, I think that in order to make a fully informed decision, the parents need to be given all the information about what to expect (as you and Sharon were), be it via statistics, a NICU tour, educational video, whatever. I also think that this information should be disseminated *before* a woman and her partner find themselves in L&D with a pending preterm delivery. (I know that, for me, I was so shell-shocked and busy trying to get through contractions, that I had no clue what the neonatologist was telling me!)

Did you ever see "Little Man"? One thing that the bio mother said really stuck with me and it was something about how, if her son depended on her for constant care for his entire life, it would make her sad for him, but she would never ever resent him for it. Clearly, this is a woman who knew what the possible consequences could be of her son's micropreemie-ness and she was willing to take them on. And he has had many negative consequences, but that has not made her love him any less and it has not made his life any less valuable than his older, full-term sister's (or anyone else's, for that matter).

Having said all that, I also have to acknowledge those who chose to let their children return to God. I can't imagine the grace and strength it must take to make that horrible decision, but I admire those who can do it, knowing that they truly have their children's best interests in mind and knowing that they have saved their children from unnecessary pain and suffering that likely would not have yielded a different outcome.

ThePreemie Experiment said...

Hi Abby,

First let me say that I am so sorry for your loss.

Second, please be aware that you are only at the beginning of your journey with your preemie. I can still remember feeling the exact same way that you do. It's normal and actually quite healthy. You need to have hope. Without hope there would be no drive and determination to get the services our little ones need.

But please keep in mind that while your journey is just beginning, there are many of us that are farther along in our journey and have already hit the bumps that will be coming up for you. I do not judge your path and how you deal with it, please do not judge the parents that are a few steps ahead of you on their path.

The research is there. The disabilities are real. I can't even begin to tell you how many parents have screamed at us (those that are currently posting on neonataldoc) during the first leg of their journey, only to come back and beg for answers as to why their child has not caught up by age 2. Or worse yet, they are shell shocked when their kids are older and the real scary stuff starts.

My daughter (25.5 weeker) was completely caught up by age 2, except for speech which she mastered by age 3 1/2. I thought we were home free but sadly that was not the case. I was thankful that I had listened to Helen Harrison when my daughter was younger. I knew was I was looking for and was prepared.

I realize this proactive approach is not for everyone. As a matter of fact, when speaking to new preemie parents I do not even discuss the hurtles that they will face in a few years, unless I am asked. For some parents I strongly suggest they stay off the blogs and preemie groups because they will not be able to handle the truth. There is nothing wrong with this and something that no one should ever be ashamed of either. The birth of a preemie and the subsequent NICU stay is traumatizing enough for most parents.

I wish you luck in your journey.

Kim said...

I don't think Abby is judging anyone or the decisions they make about/for their children. It sounds to me like Abby is suggesting that the parents be the ones who decide whether or not their micropreemies are resuscitated, and also that the parents be given accurate information about the possible outcomes for their kids. Why do you assume she is hiding from said possible outcomes? From the sound of the post, it appears that she very much appreciated the honesty and frankness of the neo team and is very proactive in the current care of Hallie.

abby said...

At the risk of reopening this discussion, I just wanted to add the following:

Of course we know what we're in for---we don't know the precise contours, but how the hell could anyone go through what Hallie (and all of the other wonderful kids whose moms are part of this great group) went through and emerge unscathed. We don't have rose colored glasses on; we're just doing what we need to do in a world that changed for us in unimaginable ways on the 6th of June when Sharon went into preterm labor. Are there hurdles now? Sure--we have all sorts of fears, perhaps founded and perhaps unfounded, lots of unknowns, not to mention eating issues (her undereating and us overeating), a million specialist appointments, and a ton of bills. All of this compounded by a lack of sleep, the fact that we're virtually housebound, the fact that we haven't slept in the same bed but once since Hallie got home (when Grammy took over), etc etc etc. Are we lucky in some respects? Sure--no major IVH issues, very little in the way of antenatal steroids, no ROP surgery, no NEC...I could go on and on. Are we unlucky? Sure--we lost one daughter, Hallie had sepsis, has trouble with the bottle on occasion, has BPD, is on oxygen, and needs to take a whole lot more meds than your average kid. But you just do what you need to do, get her as much developmental therapy as possible, advocate for her as much as humanly possible and then some, and while remaining vigilant, LOVE her and ENJOY her, that she is cooing and giggling, and loves being held by us, and is ALIVE.