Hope After Hydrocephalus

"If I encountered anyone who was trying to decide whether or not to bank, I would tell them, without a doubt, do it! It"s priceless!"
-Leigh Johnson

A healthy pregnancy

When Leigh and Russell Johnson discovered they were pregnant with their first child, they couldn't have been happier. Leigh"s pregnancy was progressing normally when she learned they were having a girl. They were immediately encouraged by their Ob/Gyn to bank the baby"s cord blood.

At 32 weeks, a routine sonogram alerted doctors that the baby"s ventricles were much larger than normal and she was diagnosed with Hydrocephalus. Hydrocephalus is due to a buildup of cerebrospinal fluid (CSF), the liquid that surrounds the brain and spinal cord. This buildup puts pressure on the brain, pushing it against the skull, causing severe damage or destroying brain tissue completely.

Caroline Johnson was born at 37 weeks on June 6, 2008, weighing a healthy 7 lbs., 15 oz.  Three days later, Caroline underwent a shunt implant to help drain the damaging CSF fluid. An MRI following the shunt surgery led to a very dire prognosis for Caroline. The doctors at Children"s Medical Center of Dallas told the Johnson"s that Caroline would not live for very long. They were told if she did survive, she would be unable to eat, see, hear, walk or talk.  The doctors said the damage was most likely caused by a stroke that occurred between 20 and 32 weeks gestation. Doctors believed there was nothing more they could do for Caroline and sent the family home with end of life hospice care.

Development continues

Caroline proved to be a real fighter. To everyone"s amazement, she began eating, and after two months, hospice care was discontinued.  In September 2008, Leigh received a call from her sister-in-law who had seen the Chloe Levine story on TV. This was the first the Johnson family heard of treating brain damage with cord blood stem cells.  They contacted Duke and CBR, and were accepted into the compassionate use program.

At 4 months old Caroline received her first cord blood infusion. Neurologists were amazed with the development that has occurred in her brain since. The family returned to Duke in June 2009 for a second infusion, and the little girl was crawling by Christmas—the greatest present the family received that year.

"If I encountered anyone who was trying to decide whether or not to bank, I would tell them, without a doubt, do it! It"s priceless!" Leigh told us in a recent interview.

A bright future

Today Caroline still receives several types of therapy (Occupational Therapy, Physical Therapy, Speech Therapy, Vision Therapy, and Cognitive Play Therapy once a month), but her parents tell us she has continued to make impressive strides. Her vision is normal and her vocabulary is growing by the day. As we interviewed Leigh for this article, Caroline had taken 40 steps on her own. Her future is looking brighter every day. The Johnson"s are thankful every day for Caroline"s continued progress, her determined work ethic, and her "sweet and fun" personality!

And what message does she have for CBR? "Thank you for all you do! It is so beneficial and so incredibly important to so many families.  We appreciate everyone at CBR!"