Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

The Village

on January 26, 2013

The Igbo people of West Africa have a saying, “Ora naazu nwa” or,  “It takes a village/community to raise a child.”

This sentiment is never more true than when referring to a child with special needs.

This eye-opening “Care Map” created by Cristin Lind portrays the web of individuals assisting her in the care of her son Gabe, a beautiful child with complex health care needs:

caremapDaunting, isn’t it?

Though certainly not as elaborate, if I were to map out Joscelyn’s “Village”, there would be quite a few similarities.

Yesterday, as we met with Dr. Lee to learn the results of the testing Joscelyn underwent prior to Christmas, the truth and value of needing such a wide and varied network of individuals was once again brought home to us.

As every parent of a child with epilepsy knows, seizure activity can be very difficult to identify and track, even with the latest and best technology. We knew that Joscelyn was seizing when we checked her back into the hospital in December but even after days of Video EEG monitoring, a Spect Scan and other testing, it was still difficult for her doctors to “see” where the seizures were originating from. Fortunately, Dr. Lee was able to stop them with medication but we still didn’t have any concrete answers.

With the holidays approaching and Joscelyn’s seizures under control, we opted to check out of the hospital and spend Christmas at home as a family while Dr. Lee performed a thorough analysis of the data that had been collected.

(Thus began “Operation: Make Merry.)

While we waited, we mailed her images to Dr. Gary Mathern at UCLA to obtain a second opinion. Dr. Mathern was very gracious with his time and proposed that an area of tissue in the mesial left frontal lobe might be the cause of Joss’ seizure recurrence. (To clarify, Joscelyn underwent a modified functional hemispherectomy in July of 2012. Sections of the left hemisphere of her brain were removed and the rest was disconnected. This procedure differs from an anatomical hemispherectomy in which the entire affected hemisphere is surgically removed.)

Dr. Mathern also sent us this excellent and informative video which explains the differences between the types of hemispherectomy procedures and references a case similar to Joscelyn’s:

As you might imagine, the idea of traveling to California to put our little girl through yet another brain surgery in an effort to “try” to stop her seizures was absolutely terrifying! Her doctors had initially been reluctant to remove the area of the left hemisphere in question because of its proximity to the hypothalamus, a part of the brain positively vital for living. As Dr. Mathern explained in the video, operating on a brain with hemimegalencephaly is even more difficult than operating on a normal brain. Since the brain is malformed, the landmarks that normally tell neurosurgeons which area of the brain they’re working on are not where they would normally be found. The surgery would be incredibly risky and might not even work.

Adding to our already swirling thoughts about what to do was a theory proposed by Dr. Lee early in the testing process that perhaps her seizures might be coming from an area of cortical dysplasia on the right hemisphere, aggravated by some slight issues she’d been having with cranial pressure caused by a buildup of excess cerebrospinal fluid. If that was the case, the treatment would involve installation of a shunt (more surgery) and heavy doses of anti-seizure medications which she would have to stay on for the rest of her life.

Either way, there was no guarantee that whichever path we chose now would be the correct one. The only certainty was that if we chose the wrong path and Joscelyn continued to seize, she could suffer irreparable cognitive and motor decline.

After reviewing Joss’ scans, Dr. Lee took it upon himself to contact Dr. William Bingaman at the Cleveland Clinic for a third opinion. Dr. Bingaman agreed with both Dr. Lee and Dr. Mathern that the seizures we saw in December most likely originated from what remained of the mesial left frontal lobe. While this may not qualify as “good news” in the traditional sense, having a team of three highly respected (and completely unrelated) pediatric epilepsy experts at least agree on the diagnosis gives us a much greater sense of peace as we move forward in the decision making process regarding her care.

Since Joscelyn’s seizures are currently being controlled with medication, everyone is in agreement that surgery is not necessary at this time. Should she (God forbid) start seizing again, at least we know what area of the brain we need to focus on. We also have the assurance that our doctor will continue to consult with other brilliant pediatric neurosurgeons and epileptologists from around the country before operating.

A village at work:

Doctors, located in hospitals around the country, putting aside any sense of ego and freely sharing their experiences and findings with one another, all to help one little girl with complex health care needs,

Therapists, tirelessly dedicating themselves to teaching our little girl how to rewire her injured brain so she can talk, walk, sing and dance,

Walking

Talking

Kindermusik Teachers, who patiently modify music and movement activities for her skill level,

Music Class

Support Organizations like the Hemispherectomy Foundation , the Brain Recovery Project and the Epilepsy Foundation of Central Florida, who help us navigate the often murky waters of hemimegalencephaly, hemispherectomy recovery and epilepsy.

Family, Friends and a wonderful worldwide community of people like YOU who faithfully walk this journey with us and keep us in your thoughts and prayers.

As time passes, Joscelyn’s village will only grow.  The branches and bubbles of her care map will expand. Her journey certainly hasn’t been an easy one (for any of us) but it has shown me the importance and value of community, and for that, I am truly grateful!

Joscelyn Playing and Giggling

Thank you for being a part of her village!

 

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4 responses to “The Village

  1. Mariellen Barr in PA says:

    I’m grateful for your updates. I think of you and Joscelyn often and like to pray her needs. I will be praying now with renewed furvor-no seizures.

    What deep love this sweet little angel must bring to your family!

  2. Ann Rebuck says:

    I just read about your story, there was a link to this from the Kindermusik teacher’s lounge. I am a Kindermusik teacher and also a music therapist. Have you been able to access any professional music therapists in your journey with Joscelyn?

    • Hi Ann! Thanks for your question! Our local Kindermusik teacher is also a music therapist. We are not doing any music therapy outside of Kindermusik at this time but I may consider it in the future. Joss loves her Kindermusik classes and finds it very motivating to be around other children her own age!

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