Nikki: The girl with no brain (Hydranencephaly) 1st of 5 parts

[Omaha Steve]

Reg req Today's full article: http://www.omaha.com/index.php?u_pg=57&u_sid=2209347



Published Sunday
July 23, 2006

Nikki: The girl with no brain

BY NICHOLE AKSAMIT

WORLD-HERALD STAFF WRITER


What's going on inside this child's head?

Doctors, scientists and ethicists offer different opinions.

Nikki Trease can't say.

Her glowing skull - illuminated by a spotlight with her mom's help - shows us the reason: She has no brain tissue above the ears. Literally.

Yet Nikki lives. And those who know her well say what's lacking is only one measure of her life.

Sixteen months ago, at the height of the Terri Schiavo controversy, Nikki's family invited The World-Herald to take a closer look.

A reporter and photographer followed Nikki and her Clearwater, Neb., family for more than a year, observing them on good days and bad, reviewing medical records and scholarly literature and interviewing experts on the girl's rare condition.

The result is a five-part series that begins today in Living. It touches on a variety of medical and ethical issues, some of which relate to the Schiavo case and a possible fall ballot initiative that would limit when food and water can be withheld from patients in Nebraska.

At its heart, however, this series is about something else. It's a window into a life unfathomable to most - a life without a brain - and the depths of a mother's love.

* * *

RELATED STORIES


»
Nikki's condition

»
Timeline of key dates in Nikki's life


RELATED LINKS


»
National Institute for Neurological Disorders and Stroke hydranencephaly fact sheet

»
International Hydranencephaly Support Group Web site


PHOTO GALLERY


»
Nikki: Where a life met love

[Horse with no Name]

1. Most of these babies

Have enough of a brainstem to breathe once or twice when they are born and then they die.
Sounds like Nikki has enough of one to maintain her breathing.
What this has to do with Terri Schiavo I have no idea.
This child was born this way.
Schiavo was not.
Nikki is basically anencephalic with water on the brain causing hydroencephaly.
She has enough brain stem to breathe.
Terri Schiavo's brain atrophied causing profound brain damage.
I am glad that Nikki's parents love this child.
However, it is comparing apples to oranges.

[Fridays Child]

2. A bugmenot.com login...

email address/user name: [e-mail]
password: password

[Beausoir]

3. I can't access it..even using BugmeNot

I used to care for a baby with this condition.

He could suck, swallow and cry...for awhile.

He broke my heart. His foster mother went to unbelievable lengths to keep him alive. She had sort of a hero complex. He was clearly failing yet she petitioned the hospital ethics committee time and time and time again to keep replacing his shunts as they failed and became infected.

She eventually turned into a hard-core Freeper type and dumped the kid in the state institution up in Grafton, ND.

What a terrible story. When he had the opportunity to pass away without pain, she denied him. Now, he lays in bed and his head is the size of a basketball. With nothing inside.

[nealmhughes]

4. My sister's first baby was diagnosed with a severe case when she was

six months along. My sister nearly died from toxemia and the doctors had to induce labor. The fetus had no skull above the eye sockets, only a brain stem. The infant died almost immediately and the body was given to science for research. There is no grave marker. She still grieves all the time when seeing a 25 year old girl with dark hair and olive skin. She tried to OD on sleeping pills after the induction, but through counselling, and the realization that both would had died, and she would not have a very happy productive marriage with a 20 year old son had she not have had intervention.

She is very religious, conservative Baptist in religion, but a rabid pro-choicer and Democrat as a result of that. When my nephew said something about restricting abortions, she went rabid on him and told him how many women died from unsterile/unmonitored situations and that no law would stop abortion, only kill more people. She then went on her soapbox of unprotected sex and no real accessible birth control for the youth, resulting in VD and abortions when a simple patch, pill and a rubber could have stopped all that suffering as well as the moral tragedy when an elective abortion is performed on every party involved.

There are simple cases when intervention is justified by every moral authority, and this was one.