New Team at Children’s Hospital Specializes in Families With Severely Ill Kids

By Rick Ruggles, Omaha World-Herald, Neb.

May 31–A five-person team at Children’s Hospital has helped in large and small ways 47 families with severely sick or injured children.

The Hand in Hand team secured a bed in the hospital so that all family members could climb in with a dying infant. The program saw to it that an extremely ill triplet made it home so the baby’s mother could photograph all her children sleeping under one roof.

It made sure that a boy had a chance to eat ice cream and cake on his first birthday. And it brought in home health care providers from central Nebraska for training in pediatric life-support equipment so a boy could go home.

Families with critically and terminally ill children face decisions that no family should have to make — whether to put in or remove life-support equipment, whether to take a baby home or to place him in a long-term care facility. Some of those families now receive support from the Hand in Hand team.

The program began as a test project in October 2006 and became a unit of Children’s Hospital last fall. The team has worked with 47 families, 13 of which have since lost their child.

Hand in Hand provides “pediatric palliative care” — team members listen to, comfort and assist families that face life-and-death decisions for their children. Team members help families make plans and goals for those kids.

“They’re kind of indescribable,” said Joyce Mann, the mother of a severely injured girl.

The Manns, of Omaha, have lived through a nightmarish 15 months. Grace Mann was a healthy toddler beginning to stand and trying to walk in February 2007. Photos show her sitting and playing on the beach during the Florida vacation in which her injury occurred.

Grace struck her head, perhaps during a boat ride. The Manns don’t know for sure when their daughter was hurt. There was no bump or bruise, they said.

That night she became progressively sick. Physicians determined she had bumped her head, which caused bleeding in the brain that led to massive damage.

Her father, Tracy, said one physician said the bump was in the wrong spot above the ear and occurred at the wrong time in her development. A more mature skull would have absorbed the blow.

The parents choke up when they talk about how their girl’s normal development was curtailed. Grace, who had started to say “Mama” and “Dada” before her injury, now can only moan. She cannot walk or hold toys, and although doctors have determined she can see and hear, it’s not clear how much information her brain can process.

Hand in Hand helped the Manns, who have a 6-year-old daughter and a 10-year-old son, accept that providing for Grace’s needs at home most likely was beyond their ability. They helped the family to place Grace in a long-term, skilled nursing center.

At Children’s Hospital, team member Erin Pike played and talked with the Manns’ two other children. She made memory scrapbooks of Grace with them, and Christmas stockings and decorations. Pike spent time with them when Grace occupied so much of other people’s time.

“They both love (Pike) to death,” Tracy Mann said of his two other children, Jacob and Emily.

The Rev. Sheila Mee, a team member and the hospital’s chaplain, prayed with the Manns. The team listened to the Manns describe their pain.

“We’re helping them be able to cope with a terrible situation. And we’re helping them continue to have hope — hope to take the next step, whatever that may be,” said Hand in Hand’s Cheryl Darnall, a registered nurse and case manager.

The Manns were in contact with Darnall from Miami, where Grace was hospitalized for close to eight weeks. Darnall helped them find a life flight back to Omaha .

Joyce Mann said doctors have given Grace “a very, very grim outlook.” She is strong, the mother said, but susceptible to respiratory problems.

The diseases and problems facing the children in the program range from incurable cancer and brain injuries to heart defects and neuromuscular diseases.

Dr. Andrew Macfadyen, Hand in Hand’s medical director, said the team helps families determine how much medical intervention they want during crises. Macfadyen does not replace the doctors who are treating the children.

Some doctors, nurses and staffers at the hospital believed they already provided this kind of guidance and comfort, said Dena Belfiore, a Children’s Hospital vice president. But they frequently can’t devote a great deal of time listening to families express their suffering, she said.

Four of the five team members have additional duties at the hospital. Sue Bace, the coordinator, is devoted full time to the program. The program does not bill for the team’s services. Some of Macfadyen’s work, such as his initial assessment, is billed and typically covered by insurance.

Pediatric palliative care programs are increasing nationwide, said Dr. Stefan Friedrichsdorf, medical director of the Pain and Palliative Care Program at Children’s Hospitals and Clinics of Minnesota, perhaps the largest such program in the country.

Friedrichsdorf said that in the past, programs for adults were far more numerous because more adults face terminal illnesses. But patients and medical professionals now recognize the need for similar programs for children.

Bace said the Omaha program is the only pediatric palliative care program in the state. The University of Iowa Children’s Hospital in Iowa City has a six-member team.

The Manns say Hand in Hand has helped them make it this far. Joyce Mann said life sometimes requires families to “take a turn to the left,” and suddenly “you have somebody measuring your daughter for a wheelchair.”

The program, Grace’s mother said, gives them a group of people to whom they can openly state thoughts and fears without being judged.

One day this month at Grace’s nursing center, the girl slept in a wheelchair as her parents talked. Both parents wore light blue rubber bracelets that read: “Amazing Grace.”

The girl woke from her sleep and opened her eyes. “You gonna wake up, little girl?” her father said softly. “You gonna wake up, Sweets?”

Doctors have suggested that the strides Grace would make most likely would come in the first year after the injury, and that year is up.

“There’s nothing — nothing — easy about it,” her mother said.

–Contact the writer: 444-1123, rick.ruggles@owh.com

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