Angel Chelsea's Story

November 9, 2000-February 17, 2001

Chelsea Renea was born on November 9, 2000.  Soon after birth she had a massive seizure and after a CT scan it was discovered she had a brain stem and cerebellum.  The rest of her brain cavity was filled with fluid and she was diagnosed with Hydranencephaly.  Naturally she was only given a few hours to live.  But she was a fighter.  For the next week and a half she was “written off” at least 5 or 6 times.  She was discharged from the hospital on November 21.   My name is Mary and she came to live with my husband and 16-yr.old daughter that day.  She became an Angel on February 17, 2001.

Chelsea was the daughter and granddaughter of very close friends of ours from church.  They were unable to take her home and give her full-time care and did not want her in the state foster care system because they didn’t want to lose touch with her.  Chelsea’s grandmother called me the night before she was discharged and asked if we would take her in and take care of her.  Of course we said “yes!”.    And with that one word our adventure began.

Chelsea was not supposed to live.  She was not supposed to suck, see, hear, probably smell, and have feelings, feel pain or discomfort.  In other words she should have been a vegetable.  But, she did all those things.  She came home with a feeding tube and she removed it in December.  She had been taking formula from a bottle fairly regularly for about two weeks then.   Her first time taking the bottle was the day she left the hospital.  Since she was maintaining/gaining weight her pediatrician let the tube stay out.  I know she liked that! 

We knew from the beginning that we would have her shunted to relieve the pressure on her head and drain off the fluid that was accumulating.  Her neurosurgeon agreed that would be the thing to do to make her more comfortable and enable us to care for her more easily.  She was shunted on Valentine’s Day, Feb. 14. 2001 and came home the next day.

Chelsea loved to smile.  Especially when you touched her hands.  No matter how badly she was feeling, you always got a smile from her when you held her hands.  So much for not having any feelings or emotions.  Even her pediatrician was surprised at that one.  Dancing.  Move her arms around and she smiled because she was dancing.  And she could have an attitude too.  Leaving a department store one day, my husband went ahead to get the car while I waited behind with Chelsea.  Since it was a cool day and she could not regulate her body temperature I covered her with a blanket to keep the wind off her.  She “yelled” at me and threw that blanket off her face!!  And if she was displeased or didn’t like the taste of something (like water) she would make a face…she would turn her lips down at the corners.  She also loved her baths.  She seemed to enjoy the feel of the water on her body (it sometimes acted as an enema.  That was not fun!!), and she would “ooh” and “coo”. 

She loved to be held.  Most of the time.  Rarely would she make a face when she was being passed around which so often happened in church.  And when she was being held she would look you straight in the eye as if she were looking into your soul.  Her little hand would wrap itself around your finger and she would become very contended and satisfied.  I know she knew she was loved, no matter what the doctors may say and I firmly believe she loved back.  Looking into her eyes was like looking at the awesome power of God in all His glory.  She was a miracle baby and a fighter until the end.   She is sadly missed and always will be.  But her legacy lives on through Rays of Sunshine and the other little babies she will “help” us take care of.  She had no brain but she taught us many things.  I learned to be humble, and patient, to not take anything for granted.  I learned about human values and that every life has a purpose, no matter how short it may be.   People told me that Chelsea was blessed to have us in her life.  But they were wrong.  My family and I were the ones blessed to have Chelsea in our lives.

“Our lives are better left to chance. I could have missed the pain, but I would have had to miss the dance.”

 

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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