March 18, 2010

Being there, as parents face their worst fears

By JOSIE HUANG Staff Writer

— By JOSIE HUANG

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John Patriquin/Staff Photographer; Friday, January,11,2008. Christina and Chris Batchelder of Wells, Maine and their 1 year old daughter Sophia have taken part in The Jason Program, that helps families with children with life-threatening diseases setting them up with home care, counseling and pain relief.

click image to enlarge

John Patriquin/Staff Photographer; Friday, January,11,2008. Christina and Chris Batchelder of Wells, Maine and their 1 year old daughter Sophia have taken part in The Jason Program with their physician Dr. Gary Allegretta (center), that helps families with children with life-threatening diseases setting them up with home care, counseling and pain relief.

Staff Writer

The death watch began as soon as Sophia Batchelder was born. Some unknown neurological disorder had gripped her tiny body, throwing her in a constant state of seizures and keeping her from breathing or swallowing normally.

It was all her parents could do to deal with doctors who seemed to speak another language and well-meaning friends and family who flocked around them when they craved privacy most.

Through the chaos, Christina and Chris Batchelder counted on a small team of health care workers who care for dying and critically ill children.

The Jason Program's social worker, nurse and doctor spoke up for the Batchelders when they were too overcome with grief. Team members accompanied the family to doctor's appointments and turned medical jargon into laymen's terms. At the couple's home in Wells, they helped the Batchelders set Sophia up on oxygen and a feeding machine, and convinced the family to bring in home health nurses.

''When you're sitting there and watching your child, you're confused and scared,'' said Christina Batchelder. ''But then you have someone who holds your hand -- literally -- and says, 'We're here. Let's figure it out.''

For years, The Jason Program has wanted to help more families like the Batchelders, and now it can.

The organization has attracted enough donors to morph from the group of volunteers that started out in 2000 into a full-time team of palliative care workers led by a medical director.

And it now has an outpatient clinic on Washington Avenue in Portland where the patients, whose conditions range from spinal cord disorders to Lou Gehrig's disease, can come in for checkups and counseling.

Opened just in the last year, the office's color scheme is bright pastels, with pictures of angels prominently displayed. A saying painted on the wall over the reception desk reads: ''Hope never leaves. Find it. Embrace it. Live it.''

Founder and executive director Kate Eastman said many more families could benefit from the Jason Program than have been helped so far. The program works with 50 to 75 families at a time, but can take more than 100 since Dr. Gary Allegretta switched from being a consultant to a full-time medical director in September, thanks to a two-year grant from the Sunshine Lady Foundation.

A telehealth program set to go live this year would also give the program the capacity to connect with families in remote parts of the state more frequently than the team is able to do right now through trips.

''There is a lot more work to do,'' Eastman said. ''Everyone on this staff is driven passionately by the needs of the kids. If there is a need and the kiddo has it, the staff will fill it.''

A NATIONALLY KNOWN PROGRAM

Eastman, a Bates College graduate, was inspired to create the Jason Program after she befriended a teenage cancer patient by that name while working as a social worker in Texas.

The young man's friends, fellow church-goers, clinicians and hospice workers joined forces to make his last years of life as full as possible, and Eastman thought how wonderful a community-based model of providing palliative care would be.

Eight years after its conception, The Jason Program is among the best-known palliative care programs for children in the country. It is also one of the oldest: palliative care for children did not emerge as a movement until the last decade or so, according to David Browning, director of the Newton, Mass.--based Initiative for Pediatric Palliative Care.

''Dying children are the last taboo,'' Browning said. ''Folks for the longest time didn't want to look at end-of-life care for adults, but they were even more reluctant to look at the death of children.''

In Maine, the Jason Program remains one of a handful of community-based programs for dying and very ill Maine children. Thanks to donations to the program, families with insurance are not asked for co-payments. and uninsured families do not have to pay anything.

Hospices also offer palliative care programs, but the Jason Program is able to work with children at earlier stages of their illnesses, according to Kandyce Powell, executive director of the Maine Hospice Council.

''Hospice programs don't often get referrals because the physician would have to admit the patient is dying,'' she said. ''At least they refer to The Jason Program, and the families get wonderful intervention from a team.''

The Jason Program is now sharing its experiences through the ''Gems of Care'' initiative funded by a group of charitable jewelers, including Stan Pollack of G.M. Pollack & Sons.

With consulting from Browning's group, the Jason Program is helping communities and hospital systems across the country develop their own palliative care programs for children.

According to the Institute of Medicine, families of the sickest children are often left bewildered by the process of navigating the health care system. A 2003 IOM report called When Children Die found the children struggle with fragmented care as they are shuttled in and out of hospitals, where caregivers don't communicate with each other enough.

DEALING WITH DIFFICULT TOPICS

The Jason Program tries to create a continuum of care by having Allegretta synthesize information from all the doctors that one patient may have. He also specializes in managing pain and controlling symptoms such as muscle weakness and spasms.

And he talks with parents about issues they never want to confront such as ''do not resuscitate'' orders, and whether their children would be better served being fed through the stomach.

''We're likely to bring that up sooner than later,'' he said. ''If you wait too long, they're too sick and surgery is not safe.''

Allegretta has visiting privileges at hospitals around the region, and assists their palliative care programs when needed. He and the program's nurse will make home visits to see Maine Medical Center's cancer patients who live hours away from Portland.

''They can help in caring for those patients by being able to go up there and look at the child with a critical eye,'' said Dr. Craig Hurwitz, director of the pain and palliative care program at Maine Med.

With the Batchelders, the Jason Program has been able to cut its visits down from a couple times a week to about every two weeks, after Sophia started eating and gaining weight.

Despite constant respiratory emergencies that prompt her mother to make teary, early-morning calls to the Jason Program and despite being sent to the intensive care unit in September, Sophia made it to her first birthday on Dec. 27.

The Batchelders threw her a party that drew dozens of friends and family.

Still, Chris Batchelder said, ''I don't think anybody else got to hold her but the guys from the Jason Program.''

Staff Writer Josie Huang can be contacted at 791-6364 or at:

jhuang@pressherald.com

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