Posted: Mar 29, 2012
Joani and Chad Harshman’s second son, Maxwell, was born with craniostenosis, a condition which occurs when one or more of the openings in an infant's skull closes too soon. This premature closing of areas meant that as Max’s brain grew, there would not be enough room to expand and allow for normal growth—causing increased pressure on the brain. Max had undergone corrective surgery at seven months of age but following his recuperation, he was still not developing normally. The family continued to see specialists for further evaluation.
When Max was one year old, he was diagnosed with hypotonia, a low muscle tone condition that can be related to abnormal brain development. The overall description of Max’s condition was “global developmental delay.”
“I am sure you can imagine the anguish and concern we had for our son,” Joani recounts. “His situation may be very different today if we hadn't discovered early in our pregnancy, information which allowed us to make a decision to store our Max's cord blood after birth.”
Because the family had privately banked with CBR, Max was accepted by Duke University Medical Center to take part in their compassionate use program where he received his own cord blood stem cells in May 2010. In addition to his infusion, Max continues to attend regular physical and occupational therapy sessions. His progress has flourished, including finally walking at almost 2 years old. His use of sign language is increasing and, at the same time, he’s becoming more verbal. Max’s family and therapists could not be happier with his development.
The medical staff at Duke advised the Harshmans to be looking for increased progress from six months post infusion. Max began walking the week before Christmas, which was seven months after his cord blood procedure. He has been on the go ever since.
Joani runs a family-friendly law practice in Kansas City, Missouri. She has become quite an advocate for cord blood banking, writing letters and emailing her Washington representatives in support of Missouri cord blood legislation which passed earlier this year. The bill requires physicians to educate expecting women on all their options regarding their child’s cord blood stem cells. Joanie and Chad had to do their own research. “We don’t like to think of how different things might have been for Max, if we hadn’t learned about cord blood banking during our pregnancy,” recalls Joani. “We simply want to ensure that families in Missouri are educated on all the cord blood options available to them.”
The Harshman family traveled back to Duke this past August for a second cord blood stem cell infusion for Max. They will be watching him closely for additional improvements in the months ahead.