Beating the odds--a mother / daughter survival story
"I cried a thousand years of tears," Janine Stearns says of her introduction to the world of disability.
"I learned the day after I delivered Savannah that something was wrong. The doctor called me and told me she had brain damage," she says. "I was so angry that he told me over the phone. When he said that he wanted me to know right away but was too busy to come and tell me personally because he was doing sports physicals, it made me feel like I was all alone and nothing more than a number for him."
Janine is a nurse and had worked for more than ten years in the hospital where Savannah was born. After she was told the news, she called her obstetrician.
"He got to my hospital room in about four minutes flat and was in as much disbelief as I was. That day I saw him cry and hug me as a person and not a patient while Savannah's diagnosis unfolded before my eyes."
Janine's negative experience with a physician repeated itself twice more before she finally found a doctor she could trust.
She explains, "Savannah was admitted into the Neonatal Intensive Care Unit in another hospital where she was treated for possible bacterial meningitis. We both stayed there for ten days. I was recovering from a cesarean section and having my tubes tied as well as breast feeding, so I stayed in a private room with her."
"After we were dismissed we had to see the pediatrician weekly for labs and I asked many questions. I asked if this could have been caused from my husband working around chemicals and he lashed out at me and said 'don't ever blame your husband for this.' I had also asked him if it could have been caused by the diet drug phen phen I was taking when she was miraculously conceived, so it wasn't as if I was only focusing on my husband. I left the office in tears and looked for a new pediatrician."
From there it got worse. "The second pediatrician was even more scary. He only wanted to see us for well baby visits and on her four-month visit he told me she was no longer micro. She was at the 50% mark on the growth charts for head circumference and weight," she says. "I was ecstatic--and in denial--and called to cancel our neurology appointment since we didn't need one."
"The neurologist called me and he said he wanted to examine her and see this miracle. It turns out her head had grown 6.5 centimeters in a month because she was massively hydrocephalic. She was taken the very next day for a periventricular shunt."
After this string of horror stories, Janine was determined to find a medical professional that would meet Savannah's special needs. "I shopped hard for the third pediatrician and we have had him since Savannah was four and a half months old," she says.
Janine has had to struggle not only to find adequate medical care for her daughter, but also to feel supported emotionally with the demands of mothering a child who has already been hospitalized seventy times in her short lifetime.
"My husband and I were not in the same place emotionally. I was so angry with him for his poor coping skills and I felt abandoned when she was seizuring or in the hospital and he would help someone else but wouldn't be there for me."
"I dealt with it poorly and was consumed with anger and shoved him aside and tried to hide it as if I didn't need him for anything. I shut myself off from friends. I felt no one could possibly understand what I was going through."
True to her fighting nature (which Savannah has inherited), Janine got through this as well. "My husband has now come a long way and we are trying to heal. My seven-year-old son, Tyler, knows Savannah is sickly but thinks she will let him teach her to drive one day. My older son Ryan, who is now 21, has been there for me. He helps with respite care and loves her dearly. She smiles when she hears him walk through the door and giggles when he asks her if she wants to be picked up."
The cause of Savannah's brain damage is still unknown. All testing has left them empty-handed. Remarkably, she is missing 95% of her brain but is still developing. Her proud mother reports that she is rolling from side to side, loves to giggle and has, like so many of our children, proven the doctors wrong.
"Savannah has amazed everyone. Her prognosis was so grim that the doctors didn't think she would survive three months. She will be four years old on July 15th, 2002. We showed them!"
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