Wednesday, February 28, 2007

Truth or Consequences?

Another good post on The Preemie Experiment today. There’s some argument about whether new mothers of preemies should be primarily reassured and given hope, or informed and given options on the course of their child’s course of treatment.

I am honestly surprised at those who would deny a realistic presentation of the risks involved with premature birth to new parents. In the weeks before and after Susan’s birth, I was obsessed with finding all of the data I could on survival rates, percentages with severe versus minor disabilities, the likelihood of a future term pregnancy after a preemie birth, etc. etc. For me, knowing the worst-case scenario, and how often that scenario occurs, gave me a degree of reassurance that hearing only the shiny-happy-miracle-baby stores could not. The unknown is always much scarier than the known. I can imagine nothing worse than being mislead into believing only good things will happen then having reality fail to live up to the promise.

Because I KNEW that most sub-1 pound babies have major disabilities, my own child’s relatively minor issues seem a lot more manageable. I know how easily we might have lost her, so I am so grateful to have her with me, and happy, that I don’t feel at all “ripped off” for not getting a healthy kid like everybody else.

This passage in TPE struck me:

Although the tone of the program [about “miracle babies” at 2 years old] was optimistic, and the parents all smiled and made positive statements about their children, you could actually see the children and their feeding tubes, cannulas, oxygen tanks, braces, etc. PT and OT were shown and described, as well as such day-to-day details of life as how to transport oxygen-dependent twins to a follow-up appointment.

This program so horrified the moms on tocolytics, that several of them asked to be taken off the drugs and discharged from the hospital to let nature take its course. They all wondered "Why didn't anyone tell us these things?"

Indeed, why didn’t anyone tell them? And more importantly, why didn’t anyone provide counseling and perspective to help them realize that feeding tubes, cannulas, oxygen tanks, etc. are NOT the end of the world or indicators of a miserable life for the whole family? There is an enormous gray area between the “miracle baby” who survives unscathed and the preemie who is catastrophically disabled for life. The majority of us live in this gray area, and (forgive me, like Holland) it’s not so bad a place.


23wktwins'mommy said...

Hello. I just found your blog and read your latest entry. I absolutely agree. I gave birth to 23 week twins in Sept. I was alerted, and read on my own, tons of statistics and realities of the life of 23 weekers. I was fully prepared to care for O2 dependent twins when they finally came home after 122 days in the NICU. We already see an EI worker, I know about the unknowns that lie ahead. I made an informed decision to treat, and continue to treat, my very preemie twins. In fact, it was OVER emphasized many times about the possible long term outcomes. I also read the worst case scenerios to prepare myself. And although I sometimes I have mini breakdowns, I know what I'm in for. I like your blog and I plan to read up on the past posts! Your miracle is beautiful by the way!

Anonymous said...

Even though I was like you and totally prepared, a depression kicked in when I met a Nicu 3 year old grad born at the same gestation/weight as mine was. She appeared unscathed. What threw me over the edge? Her mom's comment "she just learned how to jump".

Looking back its kind of funny. My kid is now fine, but it took ot/pt/speech and a LOT of work that at the time would have sent me running to the hills. To think that one little thing set me off! Hindsight is weird.