INSULAR

This post is the first in a series (hopefully) of ethical discussions. Before continuing, I urge you to please read my previous post and respect my request. Without further delay...

Insular

by Chris and Vic

Although we share ideas and advice and offer group support on-line via blogs and support lists, we are known in the family of nations as American individualists. The history of the American colonies necessarily demanded this “rugged individualism” and pulling oneself up “by our "boot straps”. This is our ethic and our culture.

Contrast American individualism with the emphasis on community or “common good” in certain Eastern countries. The good of the many largely supersedes the good of the one and is reflected in the culture and in the law. This is the philosophical underpinning of “socialism”.

Herein lies the backdrop for an ethical question:

When we consider the resources needed to support the life of one of our medically fragile, high-risk and high-need preemies, do we ever consider how much could be done for entire communities or age groups with the resources that are now spent on one preemie?

This question has been stated in other ways. For example, How many children could be immunized or receive free or subsidized school meals with the money spent on the medical care of a single preemie in the NICU? One of the medical bloggers had a campaign to buy mosquito netting for countries where malaria is a community health issue—So, how many nets could be purchased with the funds used on one preemie in his or her first year of life? How many poor Americans could get health insurance for a year (estimate $6000) if preemie hospitalization expenses were redirected to that cause?

Next question: Does this move us? Would we agree to it? That is, the good of many should be placed above the good of an individual?

We have debated on this blog, and elsewhere, that parents should have the choice . . . Could we fathom that the community, not the parents, would make a decision that would limit or redirect the considerable resources spent on a preemie?

Does anyone have any experience with this type of ethical dilemma? Has anyone ever been part of a group that decided that the good of the many, in terms of medical dollars spent, should be placed above the good of the individual?

(Vic is my 12 year old adopted son--former 25-weeker, born in the toilet after his birth mom did crack cocaine.

He had severe brain bleeds and post-hemorrhagic hydrocephalus. He had 8 shunt surgeries in his first year of life--none since, though he has lots of "malfunctions" that do not progress to all-out shunt failure. He was cortically blind, but now he sees--though not like you and I. He has cognitive disability--I.Q. of 40 but he reads at a 3rd grade level. He has mild CP--walked at age 2 1/2. He has sensory issues, feeding/growing issues. He is partly toilet-trained . . . which didn't happen till this year. He has gross motor issues--poor balance which has improved with Tae Kwon Do training. He has hyper-acute hearing--certain noises seem painful to him. He has autistic features without the diagnosis of autism. (He is too friendly, too well socially-connected . . .) He has small motor deficits--cannot do buttons, snaps, tie his shoes, etc. He has severe visual-spatial deficits--still cannot tell first from last, top from bottom, or middle, beginning from end--all those spatial concepts are just alien to him. He perseverates . . . But he is a "bright" and beautiful boy--who is on the honor roll, with a 4.0 grade point average in his special ed class in middle school He loves music, he memorizes books, he loves public radio, especially Prairie Home Companion with Garrison Keillor. Though he doesn't see well, he is a champ at mini golf and at free throws on the basketball court. We don't know how he does it.

I was his nurse in the NICU, and I took him home to die--since his first 2 shunt revisions didn't work. His shunt abruptly worked on its own on day 5 in my medical treatment foster home. He went from in-the-toilet to hospice care to the honor roll . . . a roller-coaster ride is NOTHING compared to raising a preemie.)

Ethics Series

For the past few years I have been very intrigued by ethics discussions-on all topics. Obviously the topic of prematurity-as it relates to ethics-is close to my heart.

I would like to start hosting a series of ethical discussions. I don't know how often I will be posting in the series. I guess it will depend on all of you.

First I am asking that we try, as best as possible, to keep the discussion civil. I've learned a lot about people and various topics through ethical discussions. This is my hope here. If we snap at each other or make it too personal, it won't work. I realize that arguing your point is normal in these types of discussions, but putting one another down or assuming there is a hidden agenda will defeat the purpose. The topics won't be easy to read or respond to at times. If you are feeling vulnerable-please don't enter into the discussion. Prematurity can leave a person raw at times. It is these times when it is best to come back to my blog during another discussion and leave the ethical topics for another time.

Secondly, leave your deity at the door. If we make the discussion about (insert your belief here) then it would not be a valuable ethics discussion, as everyones beliefs (or lack thereof) are different.

Lastly, if you would like to write a question for a future ethics topic, please email me at thepreemieexperiment.blogspot.com

In a day or so (when my sick child goes back to school) I will post the first topic in the series.

First up will be Chris (Chris and Vic).

Where's Stacy?

Insanely busy.

Fun stuff mixed with obligations.

I'll be back soon.

The Wait Is Over

The wait is finally over. We received the results of Paige's bone density test. No osteopenia. Yeah!! Woo Hoo!!

Yesterday we met with the endocrinologist to discuss her delayed bone age . She wants to take a wait and see approach. She is not a big believer in growth hormones unless the child completely stops growing. Even though Paige is delayed by 1 or 2 years and has fallen off of her growth curve, she is still growing. We are a tall family (women are all 5' 8" and taller, men are all over 6' 3"). The endocrinologist was sure Paige would not reach her potential but, like I said, at least she is still growing.

One very interesting topic that the endo and I discussed was Paige's NICU diagnosis of congenital adrenal hyperplasia (CAH).

A little background.... at one point during her NICU stay Paige's body stopped making urine. We were well out of the "honeymoon phase" (a term I truly dislike) when it happened. They performed a blood test called ACTH. When the results came back one of the neos sat us down and explained that Paige had CAH. We were devastated. Actually, that's an understatement. It was the nail in the coffin for me. I shut down. I couldn't believe this was happening to her.

They started her on steroids. It didn't work. She still wasn't making urine. They started her on another steroid which finally worked.

One day we were standing by her incubator and the neo approached us. (I'm pretty sure I looked like a walking zombie) He started trying to tell us what we would have to watch for as she got older and stressed to us that she would need steroids at the first sign of illness. He was with us for awhile and I'm pretty sure he talked about other things but I wasn't listening. I couldn't help but focus on the head neo watching from a distance. He was shaking his head.

As soon as I had a chance (without offending the visiting neo-oh how polite I was back then) I went and talked with the head neo. He told us that he was 100% positive that Paige's urine (or lack of) issue was a direct result of her prematurity. He went on to tell us that he did not think she had CAH. He said that he has seen it in many cases.

Sure enough, the ACTH was repeated and it came back within normal limits. Paige was weened from the steroids (in 2 days I might add-ugh) and she has been fine ever since.

A happy ending? You bet. But, because of lack of knowledge on the part of the newer neo and the fact that the head neo allowed him to "run with his suspicion" (despite knowing better), Paige had to have a few transfusions (ACTH requires a lot of blood). She also had to have the test repeated after her discharge. For the first year of her life we had to weigh diapers and mark down every bit of fluid that entered into her mouth. If she spit up, we had to try to catch it and measure how much came out. As if being a preemie parent wasn't stressful enough, we had to watch our child every bit of the day to check to see if she was going into adrenal crisis. You can't even begin to guess how many times we had to go to the doctor because her urine output was low. (which is normal)

So, as I am talking to the endocrinologist yesterday she is rolling her eyes. She told me Paige's story was not uncommon. She sees this often with inexperienced neos. She did say that the steroids were most likely needed to jump start her system but she was saddened to hear how it was all handled.

Big Climb for Luekemia

My husband and I donate to a few charities throughout the year. Our one major criteria is that the charity MUST provide support to existing patients and their families. Although research dollars are important, equally important are the survivors.

I urge all of you to read about The Leukemia & Lymphoma Society and how they are working for a cure yet also supporting the survivors as they deal with the long term impacts of their treatment.

If you are moved, please also consider helping Traci reach her fund raising goal.

http://www.active.com/donate/2008bigclimb/bc08THamilt

Thank you,

Stacy

(Tk... good luck!! I will be thinking about you on March 16th. My legs are burning just thinking about it!)