What they don’t tell you about “little miracles”

In following a link someone left on my previous entry, I came across The Preemie Experiment, a blog written by a mother of what is termed a “micropreemie”. Her daughter, now eight, was born at 25 weeks gestation and has a host of physical and mental problems as a result (although you would never know it by looking at her, she’s beautiful). Since the blog was started relatively recently I read the whole thing, and was at once saddened by the daily tribulations this poor little girl has to endure through no fault of her own and the strength, character, and lack of “God’s little gift” bullshit her mother displays. Not surprisingly, she has been demonized by others for telling it like it is-I have a bit of experience with that, heh heh-but on her most recent entry she responds to a reader who asks what she hopes to accomplish with the blog:

To neonatologists:

Stop telling parents that their preemie will catch up by age 2. This is simply not true for many kids.

Start being honest about the LONG term issues related to prematurity.

Stop using studies that ONLY follow preemies until they reach age 2 or 3.

Start conducting studies that follow preemies through elementary school and beyond.

Start giving parents the option for pallative care.

To the media:

Stop portraying the birth of extremely low birthweight children as “normal”.

Start featuring stories of older preemies, and their families, who are living with the day to day issues related to prematurity.

Thanks to INS friend Comolaflores for the link.