Reflections...Edited with pictures

There is a new tool that enables a person to enter information about their 22-25 week infant and come up with statistical information regarding survival and outcome. Warning...I tried it with S&E's info and it's not pretty.
The informational tool is provided by the National Institutes of Health and it's called the NICHD Neonatal Research Network (NRN):Extremely Preterm Birth Outcome Data. Here is the link.
http://www.nichd.nih.gov/about/org/cdbpm/pp/prog_epbo/epbo_case.cfm
You enter in the gestational week, weight, gender, singleton birth or not, and whether antecorticosteroids were administered within 7 days (the steroid shots given to mom to before delivery to improve lung and brain development.)

Our kiddos stats were/are terrible at best.

Serena
Gestational Age (Best Obstetric Estimate in Completed Weeks): 23 weeks
Birth Weight: 550 grams
Sex: Female
Singleton Birth: No
Antenatal Corticosteroids: Yes

Estimated outcomes* for infants in the NRN sample are as follows:
Outcomes (I've only included mechanically ventilated infants since both were)

Outcomes for Mechanically Ventilated Infants
Survival 38%
Survival Without Profound Neurodevelopmental Impairment 25%
Survival Without Moderate to Severe Neurodevelopmental Impairment 13%
Death 62%
Death or Profound Neurodevelopmental Impairment 75% (saying essentially the same as stat 2)
Death or Moderate to Severe Neurodevelopmental Impairment 87% (saying essentially the same as stat 3)

Edwin
Gestational Age (Best Obstetric Estimate in Completed Weeks): 23 weeks
Birth Weight: 560 grams
Sex: Male
Singleton Birth: No
Antenatal Corticosteroids: Yes

Estimated outcomes* for infants in the NRN sample are as follows:
Outcomes for Mechanically Ventilated Infants
Survival 29%
Survival Without Profound Neurodevelopmental Impairment 16%
Survival Without Moderate to Severe Neurodevelopmental Impairment 7%
Death 71%
Death or Profound Neurodevelopmental Impairment 84%
Death or Moderate to Severe Neurodevelopmental Impairment 93%

Now of course these are statistics and can't assess any individual. It also doesn't account for the extra 4 days and 3 hours past 23 weeks they received in utero. However, these are pretty grim statistics nonetheless.
So I'm forced to question...what would have happened if this tool was used with our family on September 29, 2006? We knew we faced some tough odds, but the numbers we were given in terms of survival were no where close to these, and the explanation of outcomes was unclear to say the least. We, like I'm sure all parents of micro preemies, hoped our kids would defy the odds...but did we know the chances of avoiding profound, moderate and severe impairment was only approx 7-25%? No. Would the neonatologists talked us out of resuscitating with these statistics? Would we have made a decision based on these numbers?
The painfully honest answer is I don't know. I can't tell you I still would have hung to the decision of resuscitation so strongly had I been confronted with these numbers. In spite of treatment, Serena only had a 38% chance of survival, Edwin, only a 29%. Would we have consented to putting them through the pain of resuscitation and mechanical ventilation and all that goes with that for those survival odds? I honestly can't say. I know if we had seen these numbers and had more time to think, the decision would not have come as easily...at least not for me.
But we didn't have a tool. We didn't have any concrete numbers to study other than our neo doing his best to tell us what to expect in a situation where all involved believed I would stay pregnant for at least a couple more weeks. We tried to listen and make an informed choice but who were we kidding? We were not in a place emotionally and didn't have the information to really comprehend what to expect. Could you, unless you lived it or personally knew someone that had?
So what do we do with this information?


What these numbers don't reflect are individuals. Individual children with their unique personalities and physical traits. It doesn't tell me what joy these 23 weekers could possibility bring us, nor what heartache we would and surely will endure based on their health and developmental needs. The numbers can't define our individual children but I can't dismiss them as useless. I don't know what this means for the resuscitation debate as I don't even know how it effects me personally with respect to our choices as we think about one day perhaps having more children.

I never imagined that life would take the twists and turns it has. I walked and talked early, I always performed at the top of my class and attended private schools K-12 where you had to take a test to be accepted since there was no special education. I was accepted to the college of my choice and graduated cum laude. I received an academic scholarship to law school. I've always had friends, had jobs I enjoyed, guys that were interested in me, and opportunities to vacation and simply enjoy life. I am have been extremely blessed and have never really realized or appreciated it as much as I do now. My heart breaks at the thought that life won't be as kind to my beloved children. That they may not experience the many things I have been able to.
It makes me think about our world. How those of us who are "typical," often don't recognize how this world is catered to our needs and in being so leaves so many others out.
It makes me want to advocate even more for the rights of the disabled. I am starting to investigate local school systems and figure out where the best special education services are. I am determined to make Serena and Edwin's lives wonderful, amazing, fulfilling and fun. I want them to know how blessed we are to have them in our lives and want them to have the same opportunities as every other child. My hope is that they can inspire others by their determination and kindness to all. And reading the statistics they face/d makes everything they will do that much more amazing.

And a quick side note. We had a great time at the March for Babies, but I was struck by something unsettling. Where were all these kids that these statistics reflect? As far as I could tell there was one child who is disabled whose mother I am friends with and he was not a micro preemie. We had a NICU reunion tent and yet all I saw were babies...a couple with O2, including my little guy, but no older children with notable disabilities. Why is this? Our hospital is saving these micro preemies...where are the older ones at these MOD events? I know I'm bringing Serena and Edwin to MOD events and NICU reunion opportunities no matter what their status is. I think it is extremely important to show the realities of prematurity...the happy side...survival and thankfulness and the tougher sides with physical limitations, etc. This is important to me because I don't think the story of the MOD or any outlet that raises awareness about prematurity should focus on those who miraculously walk away unscathed. It's important to talk about and witness those with varying degrees of abilities. It raises consciousness and hopefully understanding and acceptance of all. Please share your March for Babies experience and let me know what you see.

***Edited*** Blogger finally allowed me to upload these pics...some more from the park that came out better without the smudge and not nearly enough from our Walk!





March for Babies