By John Kelly
Tuesday, December 20, 2005
Children's Hospital is a lifeline for parents confronting a child's chronic illness. My assistant, Julia Feldmeier, reports on how the doctors and nurses there provide the information and support that help make even the toughest conditions manageable.
When Lisa and Todd Gibby go out with their children, Samantha and Mac , they carry with them a tube of cake gel--the sugary paste typically used for looping "Happy Birthday" atop a layer of frosting.
It's not a decorating tool for the Bethesda family: It's a life-saving device.
Both Samantha, who's almost 5, and Mac, 2 1/2 , have Type 1 diabetes, a condition where the body can't produce insulin, the hormone that helps regulate carbohydrate metabolism. When their blood sugar levels plummet, they become glassy-eyed, sweaty and shaky -- signs that they need sugar, fast. Usually a juice box will restore their sugar levels, but sometimes the children get so bad they can't swallow.
"That's when you go at 'em with cake gel," Todd said. "It gets absorbed through their gums."
If they ingest too many carbohydrates, their blood sugar levels will spike dangerously high.
"The key is vigilance," Todd said. "It's just constant."
The Bethesda couple checks each child's blood sugar level at least six times a day and adjusts accordingly their twice-daily shots of insulin. Lisa often wakes up at 2 a.m. to prick her children's fingers while they sleep and test their blood sugar.
If Samantha and Mac are particularly active, their parents take note: Blood sugars are more likely to drop with physical activity. Lisa and Todd also keep the children on a regimented meal schedule -- three meals and three snacks a day, at fixed times -- and a low-carbohydrate diet.
"I've never been able to go on a diet in my whole life, and here we are counting carbs for the whole family," Lisa said.
It's all new to Lisa, 36, and Todd, 37, neither of whom have any family history of diabetes and knew little about the disease until Samantha's condition was diagnosed in the summer of 2004. Mac's was diagnosed three weeks later, defying the 1 in 20 odds that a sibling will also have diabetes.
With Mac, who is in the throes of the "terrible twos," the diabetes regime has been particularly dicey.
"Raising a 2-year-old is tough enough," Todd said. "Raising a 2-year-old with diabetes can be mission impossible. When kids don't eat, it's bad. When kids with diabetes don't eat, it's potentially life-threatening."
The Gibbys have built a reward system to reinforce good behavior. If Mac cooperates during his blood sugar check or insulin shot, he earns a sparkly sticker.
They dub the manifold blood sugar checks "checkies," to make the finger pricks seem more endearing than frightening.
Stickers and cutesy code names might comfort children, but what softens the blow for parents plagued with worry that their diabetic children could lapse into an irreversible coma?
Cue Dr. Fran Cogen , director of the diabetes program at Children's Hospital, and her staff of doctors, nurses, dietitians and psychiatrists. Their job is as much to educate families about the disease as it is to keep their patients stable.
Step one is a crash course in diabetes care: how to monitor blood sugar levels, mix insulin types, administer shots and regulate diet. (As Lisa said, "It's like a science experiment on your children every day.")
Step two is what Cogen refers to as a "very long umbilical cord" -- a connection made by way of a daily conference call between Children's staff and parents to determine how much insulin should be administered in response to that day's blood sugar levels. The Gibbys spoke to someone at Children's Hospital every day for three weeks after Samantha's diagnosis.
Step three involves a daylong "concept class," in which patients and family are taught the why behind the insulin shots and carbohydrate counting.
Not that caring for diabetes is as easy as one-two-three.
"This is a chronic illness," said Cogen, who estimates that more than 1,200 diabetes patients are under the care of Children's Hospital, with three or more new diagnoses each week. "Our job is to keep them stable and well enough until there's a cure."
"It's an ongoing struggle, and things are changing all the time," said Todd. "It's not just a one-time, life-or-death thing."
And it's not something to brave alone.
Said Lisa: "You hear it takes a village: Children's is like a subdivision of our village."How to Help
The message from Children's Hospital is that frightened parents don't need to go it alone. If you're a family in need of help, they're there for you.
I hope you'll be there for Children's Hospital, too. We're nearly at the halfway point of our eight-week fundraising campaign, but we're struggling to reach our monetary halfway point. Your tax-deductible gift will help.
Our goal by Jan. 20: $600,000 .
Our total so far: $86,947.12 .
There are three easy ways to donate:
Make a check or money order payable to "Children's Hospital" and mail it to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.
Go online , to http://www.washingtonpost.com/childrenshospital and click on "Make a Donation."
To contribute by Visa or MasterCard by phone , call 202-334-5100 and follow the instructions.