San Gabriel Valley Tribune

 

Hemispherectomy patients gather for fun and support

By Evelyn Barge, Staff Writer

Posted: 06/08/2009 08:12:29 PM PDT



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At right, Dr. Gary Mathern, a neurosurgeon from Mattel Children's Hospital UCLA, holds a hemispherectomy patient at the first-ever Picnic for West Coast Hemispherectomy Families in Griffith Park. (Watchara Phomicinda / Staff)

 
 

 

 


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LOS ANGELES A light breeze whips through Griffith Park, as Dr. Gary Mathern cradles 19-month-old Addisyn Ross in his arms.

The doctor smooths Addisyn's tawny curls as she cries, while he talks lightly with her mother, Krissta Ross of Stockton.

Mathern, a pediatric neurosurgeon at Mattel Children's Hospital UCLA, is visiting the park on happy business. He's reuniting with several of his former patients amid a rare gathering of individuals mostly youth who share something in common: They're each living with half a brain.

Rachel Waters and son Aiden of Azusa during the first annual Picnic for West Coast Hemispherectomy Families at Griffith Park in Los Angeles on Saturday, May 30.

(Watchara Phomicinda / Staff)

 
Each, for different reasons, has undergone a hemispherectomy, a radical operation in which half the brain is removed or disconnected to treat severe seizure disorders.

At the first-ever Picnic for West Coast Hemispherectomy Families on Saturday, May 30, more than a dozen "hemi" patients and their families from all over California

assembled at Griffith Park for an afternoon of celebration and support.

The picnic was sponsored by The Hemispherectomy Foundation, an emerging non-profit dedicated to those impacted by this type of brain surgery.

Among the event's key coordinators were Monika Jones, a San Gabriel native, and Rachel Waters, an Azusa resident who serves as Western Regional Director for the foundation. Jones' son Henry, 2, and Waters' son Aiden, 5, both have had recent hemispherectomies.

"This particular surgery, and everything that goes with it when you find out someone else went through the same thing, it's like an immediate, family connection," Waters said.

It was only a few weeks ago when Ross learned her daughter is a candidate for a hemispherectomy, she said.

The Saturday gathering marked her family's first meeting, albeit an informal one, with Dr. Mathern, and Addisyn may become one of his patients.

Addisyn was born with Sturge-Weber syndrome, a rare neurological disorder in which abnormal blood vessels form on the surface of the brain. Facial port-wine stains, glaucoma and seizures are common among individuals with the progressive disorder.

For Ross and for Addisyn the meet-up of hemi families meant, in a word, "hope."

Only a year ago, this type of regional conference was nearly unheard of, mostly because there was no governing body like The Hemispherectomy Foundation to bring the disjointed hemi family, scattered across the nation in disparate cities and towns, together.

A national hemispherectomy reunion, sponsored by the John M. Freeman Epilepsy Center at Johns Hopkins Medical School and Hospital in Baltimore, has taken place every three years for the past 12 years.

But in the drawn-out interstice between national conferences, to whom could a family facing hemispherectomy surgery turn for support? For those whose children suffer dozens sometimes hundreds of seizures a day, their concerns could not afford to wait.

In June 2008, Cris and Kristi Hall of Aledo, Texas, founded The Hemispherectomy Foundation after discovering a dearth of resources in the wake of their daughter Jessie's hemispherectomy.

The 6-year-old had endured months of uncontrollable seizures before she was diagnosed with Rasmussen's Encephalitis, a progressive neurological disorder, characterized by loss of motor skills, paralysis on one side of the body, brain inflammation, dementia and mental deterioration.

"We found out there's this http://extras.mnginteractive.com/live/media/site205/2009/0609/20090609_011914_SV09-HEMI2_300.jpgdisease that's basically eating half her brain," Kristi Hall said. "We didn't have anywhere to turn we had nothing."

A Yahoo! message board dedicated to hemispherectomies "ended up being our lifeline," Hall said. Among the most active families on the discussion group, a movement was born.

After Jessie's surgery on June 11, 2008, the Halls joined with family friends, John and Caren Jennings, to shape foundation with a mission to offer encouragement to affected families, to raise funds for research and to provide financial assistance for struggling families.

Now, a year later, the foundation is preparing to transport a young boy from Bosnia to a United States hospital for surgery, said Holly Paauwe, specialty director for hemimegalencephaly (HME) and cortical dysplasia.

Julia Rodarte, 2, plays with a giant bubble with her dad Jose Rodarte, of Monrovia, during the first annual Picnic for West Coast Hemispherectomy Families at Griffith Park in Los Angeles on Saturday, May 30.

(Watchara Phomicinda / Staff)

 
An Indianapolis mother, Paauwe knows how significant this surgery will be for the Bosnian family. Her own daughter, Avery, almost 4, has HME, a condition characterized by an enlarged brain hemisphere.

 

 

The decision to proceed with a hemispherectomy is a critical one; The procedure is only considered among patients with severe neurological disorders, and only after medication has proven ineffective at stopping seizures.

"The word I use is absurd," Jones said, "when they tell your what your child has to have done."

And sometimes, as in the case of her son Henry, who also was born with a very rare kind of HME, multiple surgeries are required.

"You don't just say 'yes' or `no' to this surgery," said Kellie Ongie-Vasquez of Valencia, who sought out five neurosurgical opinions before she and her husband Frank chose a hemispherectomy for their 14-year-old son Ali'i. Ali'i suffered an in-utero stroke that wasn't diagnosed until he started having seizures at 6 months old.

Since his hemispherectomy in February 2008, Ali'i has not had a single seizure.

But improvement after such a radical surgery is not always clear-cut. Despite three separate surgeries, Paauwe's daughter still experiences seizures, but they are less intense and less frequent than before.

To equip families in the decision-making process, The Hemispherectomy Foundation opens the lines of communication between patients with the same or similar disorders.

"I don't think I would have been able to make it psychologically without that group," Jones said. "People you hardly know become your rock."

And at gatherings, families like the Rosses, as yet untouched by a hemispherectomy, can experience what the foundation calls "hope in one hemisphere."

Some arrive for the first time feeling alone in the world, Hall said, but they leave armed with facts, physician recommendations, therapy programs, newfound playmates for their children, and a virtual Rolodex full of people who've walked more than a few miles in their shoes.

"For parents, it does them so much good to see other post-op kids, and to see them walking and talking," Paauwe said. "It's like coming home."

For more information, visit www.hemifoundation.org or e-mail rachel@hemifoundation.org

evelyn.barge@sgvn.com

(626) 962-8811, Ext. 2472