Healing ill children's families, too

By John Kelly
Wednesday, December 1, 2010; 10:56 PM

It must have looked incongruous: a shackled man entering a hushed intensive-care unit where an impossibly small baby labored to breathe.

There was no hope for the baby, but maybe there would be for the man.

"That was really important to me - that the father saw that child before he died," said Edie Mead, a social worker in the neonatal intensive-care unit at Children's Hospital. The man was in jail. The baby was dying. Edie had made a flurry of phone calls and worked with authorities to allow the man to come and see his child, for the first and last time.

Two police officers stood nearby as the prisoner bent to look at the newborn. The baby had been born too early and too sick to have a chance at life. The fact that the newborn's father was in jail could have meant that he wouldn't be able to gaze upon the child during its brief time on this planet.

But Edie wasn't going to let that happen.

There are plenty of nonmedical people at Children's: chaplains, interpreters, child-life specialists, members of the Clown Care unit; and social workers such as Edie. Their presence is an acknowledgment that healing often depends on more than a scalpel. "Our role is to be here for whatever may come up," she said.

For Edie, that means meeting with parents to be sure they understand the procedures the medical team is proposing. It means working with mothers suffering from postpartum depression, an affliction more common among women who have given birth prematurely. ("You didn't have the child you thought you'd have or the birthing experience you thought you'd have," Edie explained.)

And it means writing letters, lots of letters: to fire departments letting them know a family in their neighborhood is coming home with a medically fragile child who may need 911, to the electric company requesting that an impoverished family's power not be shut off now that their newborn depends on a ventilator.

Edie writes a lot of letters to employers, too. They are tricky ones to write. Edie isn't allowed to divulge personal medical information, but she has to get across the severity of the situation and make a heartfelt request. Can the employer please be understanding?

Some bosses are. "They say, 'Take as much time as you need,' " Edie said. But even so, "some parents are in jobs where if you don't work, you don't get paid."

These parents have to make a tough decision: Do they forgo staying with their child while he or she is in the NICU so they can work? ("To not be able to be here when your child is going through that, that's devastating," Edie said.) Or do they wait until the child comes home before going back to their job? (The rules that employers have to follow are few, based on the size of the company and the length of service of the employee. God forbid you've just started working at a small business when your child takes ill.)

Edie didn't start out as a social worker. Her first career was in sales and marketing for a pharmaceutical industry trade publication. She liked the travel, but she wanted something different. She went back to school in 2004 and earned her master's of social work at Catholic University. She worked in a clinic for patients undergoing end-stage renal failure, then in the NICU at Bethesda Naval. That's when she knew what she wanted to do. She's been at Children's Hospital going on five years.

"Life doesn't stop just because you have a child in the hospital," Edie said. She's there to help it keep going on.

A helping hand

Want to help the families of sick children without having to earn a master's in social work? Contribute to our annual campaign for Children's Hospital. Our goal is to raise $400,000 by Jan. 7. So far, we've raised $44,605.21. To make your tax-deductible donation, send a check or money order (payable to "Children's Hospital") to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.

To donate online with a credit card, go to www.washingtonpost.com/childrenshospital or call 301-565-8501.

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