Angel Caleb's Story

June 17, 1996-March 16, 2000

Caleb Connor Battle was born June 17, 1996. This is his story. Jeff and I had been married two years when we discovered I was pregnant. Everything seemed to be fine. At 20 weeks I had my first sonogram. After concerned faces on doctors and sonographers, I deciphered from them I was carrying twins, one had hydrocephalus and one had no heartbeat. I then discovered the baby with the heartbeat was the one with massive hydrocephalus. I get chills to this day remembering that one. I saw a perinatologist the next day who confirmed the information I had to pry from the medical staff the previous day. From then on I saw the perinatologist every two weeks who always said massive hydrocephalus and reminded me that we could terminate the pregnancy and "just start over". Such trite words for such a heavy situation. We were given the impression brain existed but could not be seen due to the "water." As lay people we would never have thought no brain existed because this would not be congruent with life--we thought. Caleb was born one month early--after a labor I will not begin to get into. He was cleaned up and quickly whisked away after I was given a glance of his face--he was completed swaddled in blankets. I was taken to see him in the Neonatal Intensive Care unit when I was done in labor and delivery. At this time the doctor noted some anomalies. That night a CT scan was done. The next night, in the middle of NICU (right by the entrance) with people and babies everywhere, a neurologist told us most of Caleb's brain had died. He believed when Caleb's twin died at about 15 weeks, a blood clot formed cutting off circulation to Caleb's brain causing it to die. He believed his brain had formed normally. This was obviously the worst possible news. We went to Caleb's bed side and let the tears flow. That evening we drove home and left Caleb in the hospital--something I have never done again. We looked at each other and saw clearly how our situation could tear us apart or pull us together. We have pulled together. After 16 days in NICU, Caleb came home. He was not holding his temperature or gaining weight and was fed through an NG tube. Within 2 weeks he was taking a bottle with no problems. Until he was 2 1/2 years old he took a bottle. He had a VP shunt placed at 2 1/2 months. He started having some seizures about 6 months of age. Thankfully, his seizures are controlled easily by Phenobarbital. He had his first ear infection at 9 months at which time we discovered his major antibiotic intolerance. To this day, his worst problems have stemmed from taking an antibiotic. At 1 1/2 years Caleb had RSV pneumonia and was hospitalized. At 2 years he started aspirating when taking his bottle which I believe was caused by swollen glands under his jaw. On Christmas day, 1998, he went into the hospital with double pneumonia from aspiration. He had a g-tube and Nissen Fundoplication to control reflux. He is getting somewhat used to it but I will hate it forever. Caleb took extreme pleasure in taking a bottle--he had even learned to drink from a sippy cup. Caleb has no siblings but not for lack of trying. We believe Caleb needs siblings. Jeff and I have incredible support from our family, church family and community. Our biggest asset is Jeff's patience. He is so patient through my roller coaster of emotions. He is our rock and I cannot imagine surviving without him. We are so thankful for each other and our Caleb (Caleb means "brave" or "courageous"). Caleb has more will to live than most healthy people. He is happy and healthy and we would much rather have Caleb the way he is than not have Caleb--no doubt about it. Caleb's smile and laugh are as sweet as it gets.

Caleb died in his sleep March 16, 2000

Caleb now has a baby sister whose name is Grace Connor Battle. She was born on December 24, 2000

 

 

 

 

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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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