Author Topic: Child born without a brain is now six years old  (Read 2405 times)

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Offline flowers

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Child born without a brain is now six years old
« on: July 15, 2013, 03:14:56 PM »
http://boston.com/community/moms/blogs/parent_buzz/2013/07/child_born_without_a_brain_is_now_6_years_old.html

Quote
Imagine your child being born without a brain.

It's what April Barrett faced six years ago when her daughter Kaliysha was born with hydranencephaly.

"My doctor told me a week before I delivered that she would be born without a brain and he told me to go take a picture of my belly that that would be the last time she would be alive," Barrett says in the Fox 59 report above.

But Kaliysha survived for six years with only a brain stem and is still alive today. This is unusual because, according to the National Institute of Neurological Disorders and Stroke, "many children with this disorder die before age 1. However, in rare cases, children with hydranencephaly may survive for several years or more."

Kaliysha is now on hospice care after "an illness damaged what little use she had in her brain stem." As her mom gets ready to say goodbye, she says she cannot afford her daughter's funeral and burial. Those who wish to help can donate at any Chase Bank. The family has set up a fund called "Pace of Miracles." Read more in this Fox 59 report.

What exactly is hydranencephaly? Here is a definition from the National Institute of Neurological Disorders and Stroke:

    Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits.

Yikes, never even heard of this. Wow. 


Offline Rapunzel

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Re: Child born without a brain is now six years old
« Reply #1 on: July 15, 2013, 04:29:15 PM »
My stepsisters son and DIL had a baby boy born with a form of this. He lived just under two years... they loved him and cared for him (the entire family) as if he was normal right up until the end.  They also kept a blog the entire time from the time they learned while she was pregnant this was likely the situation they could expect with the baby.  They are now expecting another baby this December.

Offline flowers

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Re: Child born without a brain is now six years old
« Reply #2 on: July 15, 2013, 05:00:37 PM »
My stepsisters son and DIL had a baby boy born with a form of this. He lived just under two years... they loved him and cared for him (the entire family) as if he was normal right up until the end.  They also kept a blog the entire time from the time they learned while she was pregnant this was likely the situation they could expect with the baby.  They are now expecting another baby this December.
I have a few questions for ya if OK to ask you?


Offline Rapunzel

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Re: Child born without a brain is now six years old
« Reply #3 on: July 15, 2013, 05:01:10 PM »
I have a few questions for ya if OK to ask you?

sure

Offline flowers

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Offline flowers

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Re: Child born without a brain is now six years old
« Reply #5 on: July 15, 2013, 05:43:22 PM »

One, you can bitch about "Y ME?!" and curse the Heavens 4 this extra burden that's been bestowed upon U...

Or, as most of my friends have discovered,
there's a special, deeper, more dependent, love that develops between a special needs child and their primary caretaker...MUD

 :0001:

BTW...thank the Good Lord above 4 my 2 wonderfully healthy young'uns... :bighug:
I agree.


Offline mountaineer

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Re: Child born without a brain is now six years old
« Reply #6 on: July 15, 2013, 05:52:28 PM »
A TV news reader in Pittsburgh, Kelly Frey, gave birth to a child with a similar disability. He didn't die shortly after birth, as expected.
Quote
It was around this time in 2009 when Frey was 13 weeks pregnant. The parents-to-be talked about possible names, dreamed of how their child would look and started an addition to the house -- but then came the crushing news.

Where they should have seen brain tissue on the ultrasound, there was black. Much cerebral fluid filled their baby's delicate head. If he lived to birth, doctors said he would most likely die within a short time. ...

Frey said Bennett's diagnosis has changed dramatically since birth. Originally, doctors thought he had holoprosencephaly -- essentially, a condition where part of the brain doesn't grow. Instead, Bennett was born with severe hydrocephalus and a rare malformation called Dandy-Walker syndrome.  Where most people have cerebellum -- the area that controls motor skills, things like balance and brushing your teeth -- Bennett has very little. His shunt drains the excess fluid from his head and keeps it from building up. It will stay in him forever. ...

Images seen in the MRI scan of Bennett's brain when he was less than 12 hours old have changed. Over the past seven months, the shunt has relieved pressure from fluid in his brain and allowed his cortex area to expand and fill his skull. Where they didn't see cerebellum before, he now has some. ...

WTAE story from 2010[url]

« Last Edit: July 15, 2013, 05:55:19 PM by mountaineer »
A day without sunshine is like, you know, night.

Offline flowers

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Re: Child born without a brain is now six years old
« Reply #7 on: July 15, 2013, 06:08:41 PM »
A TV news reader in Pittsburgh, Kelly Frey, gave birth to a child with a similar disability. He didn't die shortly after birth, as expected.
WTAE story from 2010[url]
Thank you for posting that link. Answered many questions.


Offline flowers

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Re: Child born without a brain is now six years old
« Reply #8 on: July 15, 2013, 06:09:47 PM »



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