When the Spirit Catches You: A Child with Infantile Spasms

The first thing that Kindra noticed was that she wasn’t gaining weight.  A visit to her doctor confirmed her suspicion.  She was definitely heavier at this point during her first pregnancy.  A look at the baby boy growing inside of her showed him to be very small for 30 weeks.

Kindra was able to carry her baby, and her family was overjoyed when she gave birth to a son, a brother, and a handful.  They named him Justin.

Justin seemed fine.  He was a little smaller than the other babies, but everything seemed normal.  His parents grew concerned when he didn’t put on weight, and another visit to the doctor brought a diagnosis of pachygyria.  It is a rare malformation of the brain that caused Justin to have seizures across one side of his body.  Justin’s family watched as he began to experience infantile spasms.

What must it be like to see your child experience this?

A child with infantile spasms will have delays in their development.  When other children crawl, yours may not.  When other children babble, yours may stay mute.  When other children begin to walk, yours may be like Justin; he requires a very special wheelchair.

Imagine life for Justin.

We came across a blog a few weeks ago that is written by a father whose daughter is very much like Justin.  He has spent the past four years documenting the painful cycle of diagnosis, treatment, therapy, hope, and very often failure.  Marissa’s Bunny is often an outlet for Marissa’s father, but is brutally honest about the challenges that Marissa and her family face.

It can be hard to imagine what is going on for children like Justin and Marissa.  While they do have a form of epilepsy, they are still children.  Some have compared seizures and spasms as being paralyzed but moving.  The activity of the brain during an event has been described as a circuit breaker tripping during an intense storm.

A few folks have had an interesting take on that brain activity.  The American Epilepsy Society has a lecture series about research and dealing with epilepsy.  At their December meeting they unveiled a piece by the Relanche Ensemble.   In a work entitled When the Spirit Catches You, they put a seizure to music.  A young composer, Cynthia Folio, who has a daughter with epilepsy, wrote the piece.

At the University of Kansas, three professors also used music to help people “experience” these episodes.  Two of the professors work in music theory and composition, and the third is a professor of neurology.  They used a piece by Mozart that is then “deconstructed” to demonstrate the random firing of neurons.  The resulting “concerto” was performed by the KU orchestra and illustrates the dynamics of a seizure.  It became the soundtrack for their film, It is Epilepsy-The Challenges and Promises of Automated Seizure Control.

Having epilepsy, and especially a form like infantile spasms, is most certainly a challenge. For many, hope comes in rare spurts.  Perhaps works like these can help us to better understand what living with infantile spasms is like, and perhaps an understanding will lead to breakthroughs in learning.  Perhaps children like Justin and Marissa will have hope for a cure in their future.