Expanding Cerebral Palsy Knowledge with Three New Books

Spastic hemiplegia is a very common subtype of cerebral palsy (CP), and CP itself is the most common cause of childhood-onset physical disability. 

Spastic hemiplegia affects the upper and lower limbs of one side of the body. The upper limb is usually more affected than the lower limb. This practical guide addresses spastic hemiplegia across the lifespan and the evidence-based, best-practice treatments. It also includes the lived experience of families. 

The writing of Spastic Hemiplegia was led by Marcie Ward, MD, pediatric rehabilitation medicine physician at Gillette Children’s. 

Spastic Diplegia, second edition 

Spastic diplegia is a very common subtype of cerebral palsy (CP), and CP itself is the most common cause of childhood-onset physical disability. 

With spastic diplegia, the lower limbs are much more affected than the upper limbs, which frequently show only fine motor impairment. Now in its second edition, this practical guide addresses spastic diplegia across the lifespan and the evidence-based, best-practice treatments. It also includes the lived experience of families. 

The writing of Spastic Diplegia was led by Lily Collison, MA, MSc, the parent of a son with spastic diplegia. 

Spastic Quadriplegia  

Here is an excerpt from Spastic Quadriplegia, written by Kate Edin, parent author: 

“At two weeks old, my son Levi began to get sick. It happened quickly and was untraditional in presentation (being "untraditional" would become Levi's pattern for his entire life). His temperature spiked and his heart rate increased. He also wasn't tolerating his feeds. The doctors suspected necrotizing enterocolitis, or NEC, an infection that is prevalent in the NICU. They predicted his illness would follow the normal course and that they would have a few days to combat the illness with antibiotics.  

But Levi didn't do what was expected, and within hours he was rushed into surgery because his bowels had perforated due to the NEC. The surgeon was able to remove all the dead intestine and brought the ends of his living intestine out to the surface through an ostomy (a surgically created opening). The surgery was tough, but brain scans still showed no hemorrhages or damage.  

The next day, when his twin brother Cam began to present with the same signs of fever and increased heart rate, doctors immediately suspected NEC and placed him on high-powered antibiotics and the JET vent (high-frequency air delivery). With that support, Cam's little body was able to fight off the infection.  

What happened next is important to understanding how Levi wound up with cerebral palsy. At about eight weeks old, he was ready to have his ostomy taken down and the ends of his intestines reconnected. The surgery was supposed to be routine, but as with everything Levi experiences, it did not go as expected. The surgeon found more necrotic tissue that needed to be removed, and Levi's little body couldn't maintain his blood pressure during the extensive procedure. It was after this surgery that his brain scans looked different from his brother's, and we pinpoint that as when Levi's CP came into being.  

When the doctors first discussed the brain scan with me, they threw around acronyms like CP and PVL (periventricular leukomalacia, or injury to the white matter in the brain) and reminded me that no one can predict how a child with a brain scan like Levi's would do. They said they thought he would likely have ankle and foot issues based on the imaging. The white matter in Levi's brain was impacted by the PVL, but the gray matter was not, which was significant when Levi was eventually diagnosed with CP.  

I went home and researched cerebral palsy and PVL. I was overwhelmed and unsure of what to do. Although I did not know it at the time, Levi's birth was also a second birth for me. I had gone from being a typical 29-year-old first-time mom of twins to being a special needs mama bear whose life focus was now learning how to support, empower, and advocate for her child.”