[blparent] Feds Fault Preemie Researchers For Ethical Lapses

[Jo Elizabeth Pinto]

I do know they've come a very long way in preemie care since I was born in 
1971.  When I popped out, the bag of waters hadn't broken, and the way my 
mom tells it, they just brushed me aside and started taking care of her. 
Then one of the doctors saw my feet kick in the sack out of the corner of 
his eye, and he said, "Oh, I guess the baby isn't dead."  So they ruptured 
the bag and showed me to my mom.  Sixteen inches long, two pounds and two 
ounces,nothing but skin and bones.  She said I looked like a Rhesus monkey. 
The doctor told her not to get attached because I wouldn't live through the 
hour.  My dad got there, having been summoned back from a short business 
trip, and they arranged an emergency baptism.  I wasn't supposed to live two 
hours, then four, then I'd never make it through the night.  I understand 
the grim predictions were meant to shield my parents somehow, but my mom 
took the warnings of the doctors to heart and didn't get attached, and I 
honestly think her holding back emotionally did lasting and permanent harm 
to our relationship.

I went into the incubator, not to come out for the next few months at all. 
Nowadays they encourage parents to touch their babies through the ports in 
the incubator if possible, and they have skin-to-skin contact and kangaroo 
care so the babies can be held and carried around while still hooked up to 
the oxygen.  A friend of mine had a preemie and described it all to me a few 
years ago.  But when I was born, standard procedure was to protect the baby 
from possible infection by touching as little as possible, and then only by 
the hospital staff.  Because of that, a lot of babies who spent a long time 
in incubators developed an aversion to touch, and their parents had trouble 
bonding with them when they came out because they'd spent a few months 
watching the baby under glass but had virtually no contact.  My mom said 
when it was time for me to leave the hospital, a nurse got me out of the 
incubator, wrapped me up, and handed me to her, and her first thought was, 
"What am I going to do with that?"

Then too, the effects of the oxygen weren't completely understood, so my 
eyes weren't tested.  My mom took me home, and I didn't want to be touched 
or held, partly because I wasn't used to it and partly because I couldn't 
see anyone coming at me, so I was just scooped up out of nowhere.  She said 
I would fight and scream and try to wriggle away from people.  Hardly the 
stuff of bonding.  They didn't know I was blind till months later.

Sorry for the novel, but I hope other people share.  This is fascinating to 
me, and especially the progress that has been made over the last forty or 
fifty years or more, because with any luck, things are very different now.

Jo Elizabeth

Truth is tough. It will not break, like a bubble, at a touch; nay, you may 
kick it about all day like a football, and it will be round and full at 
evening.--Oliver Wendell Holmes, Sr.
-----Original Message----- 
From: Star Gazer
Sent: Friday, April 12, 2013 2:10 PM
To: 'Blind Parents Mailing List'
Subject: Re: [blparent] Feds Fault Preemie Researchers For Ethical Lapses

Thank you. This intrigues me.
Anybody else want to share? I like learning how things were done back in the
day as to how they are now.

-----Original Message-----
From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of Sheila
Leigland
Sent: Friday, April 12, 2013 4:04 PM
To: Blind Parents Mailing List
Subject: Re: [blparent] Feds Fault Preemie Researchers For Ethical Lapses

Hi, my mother never said to much except I was in an isolet and I was never
out of the oxygen until the day I went home from the hospital after being in
the hospital for almost three months.

Sheila Leigland

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