Jacksonville, Fla., Family Visits Washington, D.C., To Advocate Care Coordination for Medically Complex Children

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In mid-June, representatives from Wolfson Children’s Hospital went to Washington, D.C., to attend 2015 Speak Now For Kids Family Advocacy Day, sponsored by the Children’s Hospital Association. During their visit, they spoke to legislators on Capitol Hill about the importance of care coordination for children and families with a medically complex child.

The James family meets with U.S. Rep. John Mica – R-Fla. 7th District on Capitol Hill

“We really need more programs like the Bower Lyman Center for Medically Complex Children. It’s so important. They have to exist, and they must be supported.”

Twenty-month-old Journey James has more medical needs than most children her age. Born with a rare genetic condition that causes developmental delays and medical complications, she requires constant and palliative medical care. The coordination of this care by the Bower Lyman Center for Medically Complex Children at Wolfson Children’s Hospital in Jacksonville, Fla., has helped her parents navigate through the confusing and sometimes scary process of caring for a child with multiple health issues.

In mid-June, Journey, her family and representatives from Wolfson Children’s Hospital went to Washington, D.C., to attend 2015 Speak Now For Kids Family Advocacy Day, sponsored by the Children’s Hospital Association. During their visit, they spoke to legislators on Capitol Hill about the importance of care coordination for children and families with a medically complex child.

The James family, along with the director of THE PLAYERS Center for Child Health at Wolfson Children’s Hospital, met with U.S. Reps. Ted Yoho – R-Fla. 3rd District; Ron DeSantis – R-Fla. 6th District; John Mica – R-Fla. 7th District; Corrine Brown – D-Fla. 5th District; and staff members of U.S Rep. Ander Crenshaw – R-Fla. 4th District, Sen. Johnny Isakson – R-Ga., and Sen. David Perdue – R-Ga, to discuss the Advancing Care for Exceptional Children (ACE) Act of 2015, which allows for the creation of nationally designated children’s hospital networks for children with medical complexity. This legislation would create a national framework for the delivery of care coordination to children with medical complexity, and their families.
“People who have not been in our situation have no idea of how lost families are and how confusing the process is, not only during recovery but also with coping, how to get places, where to go for help, and how to handle the financial aspects of long-term, complex care,” Journey’s mom, December James. “We really need more programs like the Bower Lyman Center for Medically Complex Children. It’s so important. They have to exist, and they must be supported.”

The Bower Lyman Center for Medically Complex Children offers kids like Journey a “medical home,” where she goes for monthly check-ups with her primary care physician Kelly Komatz, MD, MPH, the medical director of the Bower Lyman Center for Medically Complex Children. The Center’s team coordinates all of the care Journey needs, including scheduling appointments with various specialists, and connecting the family with services like Community PedsCare, a Community Hospice outreach program in Jacksonville that provides in-home palliative care and medical support to children with life-limiting conditions.

“As parents of a child with special needs, we couldn’t be without the coordinated care the Center provides,” said December. “They really guide and encourage you, and give parents like us peace of mind as we navigate through the unknown.”

Journey’s Story
Their James family’s journey into the unknown began with the moment Journey was born. Aside from the concerned atmosphere in the delivery room that October day in 2013, father Allen James noticed that she had an unusually shaped jaw, and her feet and hands were malformed. She also was struggling to breathe, and taken promptly to the NICU for evaluation.

Two weeks later without a confirmed diagnosis, Journey was sent home on oxygen and a heart monitor, and less than a week later, mother December awoke at 3 am to find her baby blue and unresponsive in her bassinette.

“I believe in angels because I heard someone tell me to wake up and pay attention, and when I did, I heard her take her last breath,” said December. “I scooped her up, called 911, and started CPR. On the fifth round, I finally got her to take a big breath, right as the paramedics got there.”

At her request, Jacksonville Fire and Rescue transferred Journey to Wolfson Children’s Hospital’s ER where she stopped breathing again. When they finally were able to stabilize her, she began swelling up and convulsing; test showed she had bacterial meningitis. As the Wolfson Children’s PICU team began intravenous antibiotics to fight the infection, the results of the blood work taken when she was born came back confirming what the pediatric geneticist suspected; Journey had Trisomy 18.

Also known as Edwards syndrome, Trisomy 18 is an often-fatal, rare genetic condition caused by an error in cell division that triples the 18th chromosome. The extra chromosome causes disruption in the normal pattern of development that can lead to heart defects, kidney problems and other life-threatening issues. Half of babies with this condition actually are born alive, but only about 10 percent make it to their first birthday. Journey’s bout with meningitis was an unrelated complication, but her diagnosis made surviving it that much more challenging.

Dr. Komatz, who also is board certified in the subspecialty of pediatric Hospice and Palliative Medicine, was called in once Journey’s diagnosis was confirmed. She explained to December and Allen that the first order of business was to get Journey over the infection. If that resolved, they would then address the Trisomy 18 diagnosis, and its medical concerns. As the weeks went by and Journey began to improve, her parents began to feel hopeful.

“There are grown men who die from bacterial meningitis,” said December. “We said, ‘She is still alive, so she obviously is telling us she wants to be here.’”

Journey died twice in her first five months, once from the meningitis, and again when a feeding tube migrated into her lungs causing both lungs to collapse, and her heart to stop. Both times, she received CPR from December until the team at Wolfson Children’s Hospital could take over and save her. The most critical stage for children with Trisomy 18 is the first two years; after that, the odds of survival grow. Some live 20 or 30 years, but will always require full-time care.

Today, she is nearly 21 months old, but is about six months old developmentally, and weighs only 15 pounds. Since December left her job as a school principal to stay home with Journey several months ago, her daughter has gotten bigger and stronger. She receives occupational, speech and physical therapies at Wolfson Children’s Rehabilitation Services.

“They know that we are available for them on call 24/7, we know Journey, and her family’s wishes and goals for her,” said Dr. Komatz. “We have laughed and cried together, and we take one day at a time together. We have their back.”

On Journey’s first birthday, the family celebrated by bringing cupcakes and doughnuts to the first responders at area fire stations who came to their aid, and the caregivers at the hospitals where she received treatment. On her second birthday, the family will have an even bigger reason to celebrate. But until then, they will continue to cherish every day they have with their little girl.

“Journey is so adorable, such a little snuggle bug, and she has a beautiful smile,” said December. “We just love her so much.”
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Vikki Mioduszewski
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Wolfson Children Hospital
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