Published in CenterView October 26, 2009
Online updates tracked condition of 12-year-old Maggie Lee Henson
A phone call that should have been just one of thousands between a mother and daughter turned into the last conversation 12-year-old Maggie Lee Henson and her mom, Jinny, would ever have.
Maggie Lee Henson
Sign up to do a good deed in honor of Maggie Lee
Henson's 13th birthday
Oct. 29 at
www.maggieleeforgood.org.
The call came on July 12 while Henson and 23 fellow students and counselors were on a church bus heading to a Christian youth camp in Georgia.
"Maggie Lee and I were in constant communication whenever we were apart," said her mother. "As usual, we ended our conversation telling each other, 'I love you.'"
Minutes later, the bus blew a tire and overturned, ejecting Henson and eventually landing on her.
Henson suffered a brain injury and was transported to the pediatric intensive care unit at the Blair E. Batson Hospital for Children, where doctors immediately put her into an induced coma to help ease brain swelling. It was there that Jinny and John Henson began their electronic dialogue with the community.
After arriving at Batson Hospital, the Hensons used their smartphones to e-mail and communicate through Facebook to worried friends and family. John began using his Twitter account, which links to his Facebook page and blog, to send information and updates.
"All of this was preferable to using the phone," John said. "Our voicemail boxes were full and we didn't have time to call people back."
Instead, thousands of people simultaneously received updates on Maggie Lee's condition.
Then Lindsay Clairain, one of Maggie Lee's nurses, suggested the family set up a CaringBridge page. Clairain follows some former patients on the site, receiving e-mails whenever patients update their pages. She used the site only recently after learning her mother had terminal cancer. Clairain said she initially believed the site's primary benefit was taking the communication burden off the family.
She and her sister, also a PICU nurse at Batson Hospital, soon realized an unexpected benefit to the site — the groundswell of support coming through her mom's page.
"Being on that side of health care was very new and scary to us," Clairain said. "It is amazing the amount of strength that can be derived from a simple, 'Hello, I'm thinking about you' from a friend."
Online tools
A plethora of free Web-based tools is available for communicating with friends and family. During a time of crisis, these tools can become indispensable for patients and their families to send important information and updates, but also to receive support and encouragement.
Facebook allows users to create and update a personalized Web page with information about themselves. Once done, they can add fellow Facebook users as "friends," upload photos and share links and videos. To receive updates on friends, users must have their own Facebook page.
Twitter answers the question, "What are you doing?" in 160 characters or less. Updates are sent to anyone who signs up to receive them.
CaringBridge, designed specifically for hospitalized patients and their families, also lets users create and update personalized Web pages. However, the updates tend to deal with information about illnesses and treatments as well as the day-to-day stresses of being in a hospital. Users do not have to have their own CaringBridge page to receive updates; they can simply enter an e-mail address to be notified by e-mail when someone posts an update to his or her page.
The Hensons had a similar experience with the site. Jinny recalled her family operating in what she called a "trauma fog" after the accident and said they were grateful for the site, which helped disseminate information to the vast number of people who signed up for updates on Maggie Lee's condition.
"It would've been impossible to garner the strength to relay the same information numerous times," she said.
And just like Clairain, the Hensons received an outpouring of support from friends, family and even strangers during the crisis. Maggie Lee never regained consciousness and died Aug. 2.
"The support we received reminded us that we were not alone in this awful ordeal," Jinny said. "People were praying for us and sending us verses of God's hope that were life-sustaining as we were by Maggie Lee's side. We will never forget the kindness of friends and strangers alike."
Dr. Rick Boyte, professor of pediatrics and director of the Division of Palliative Medicine, believes hospitalized patients and their families need the support of family and friends and that the online tools offer a different, additional way to meet that need.
"These new online tools allow for reflection by both patients and parents on the situation and their lives."
Support continues flowing to the Henson family through Facebook and CaringBridge. After Maggie Lee's death, a woman who tracked her progress on CaringBridge suggested recruiting 1,300 people to commit to doing a good deed on Oct. 29, which would have been Maggie Lee's 13th birthday. The Henson family thought it would be a wonderful way to spend what easily could have been a somber day.
They used their daughter's CaringBridge site to recruit people, and within 24 hours, 1,500 people committed, so the goal jumped to 13,000. At present, there are nearly 17,000 signed up. The family named the cause "Maggie Lee For Good" — a nod to her favorite song, "I Have Been Changed for Good" from the Broadway musical, "Wicked."
A Maggie Lee for Good Facebook page and Web site followed. All three sites display photos and videos of a beautiful and vibrant Maggie Lee and tell the story of the Hensons' only daughter.
"We firmly believe that there is no situation too devastating for God to bring good from," Jinny said. "So many people were pulling for Maggie Lee's miracle and, although it did not come, we all still have this intrinsic desire to see good have the last word."