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Researchers listen up as Joanne Pollak, general counsel, outlines HIPAA directives. Below, Pollak; below right, Carol Richardson, privacy officer, slogs through HIPAA's reams.

The triplets today: Alyssa, Cassandra, and Brooke Mclltrot.

Just Look at Them Now!

At reunions this past summer, hundreds of former patients and family members returned to the place where the healing began. They came to see the doctors and nurses who helped them, to express thanks, to show how far they'd come, to seek support among others with whom they shared a common bond. Enormously gratifying for faculty and staff, these happy occasions presented a relaxed environment in which there were no longer "doctors" or "patients," but just plain people.

-by Anne Bennett Swingle

The Mora quituplets (with older sister Tatiana, far left, and motehr Gisele) Oldest grad Mark Bernard, born in 1977, with his mother. Triplets Faith, Grace and Charity Herman. NICU medical director Susan Aucott with baby Jordan Creighton

NICU Grads Converge
No one knows just how long the neonatal intensive care unit has been holding its annual reunions; some veteran nurses say it's as long as they can remember. One thing is certain: the NICU reunion is always one gigantic affair. This past summer, on the afternoon of July 17, about 450 people, including 140 NICU "graduates," turned out on Turner Concourse to see the nurses and doctors who brought them back from the brink.

Among the grads were 11 sets of twins, three sets of triplets and one set of quintuplets. They were in strollers, they were in arms. There were toddlers, and even teens. One teenage boy claimed the record for the lowest birth weight: 12 ounces. A 25-year-old man, Mark Bernard, was recognized as the oldest grad in the group. "I come back every year," said the strapping East Baltimore resident. "I like to show my gratitude to them for keeping me alive."

A few were handicapped. But, said NICU medical director Susan Aucott, "you see that regardless of the outcome, they're happy and thriving. It's great for the morale of the NICU staff."

Pushing her baby in a stroller with 3-year-old triplets in tow, Kim McIltrot recalled the triplets' two-month sojourn in the NICU: "The staff was great," said McIltrot, a nurse practitioner at the Children's Center and ironically, a triplet herself. "They have you change diapers, take temperatures, change bedding. They were wonderful with my family. They even had the grandfathers changing diapers."

Another set of 3-year-old triplet girls waited their turn at the face-painting table as their mother, Vicki Herman, of Hagerstown, Md., reminisced. "I got emotional when I arrived today. When we left the NICU, there was so much to do at home that I never got a chance to say thank you," said Herman, who has two older children. "That's why we came today."

Children, too, come to express thanks. "Some kids ask to see a certain nurse," said Sue Culp, NICU nurse manager. "Of course, they didn't know the nurse when they were here, but the parents have told them about the nurse who took care of them. It's more than enough to make you want to come to work the next day. And it's nice closure for families to be able to show us that they're doing okay."

The Ultimate Brain Surgery

Ten years ago this fall, Jody Miller underwent a drastic procedure in which half her brain was removed. The operation, known as a hemispherectomy, is performed on a small number of patients with intractable seizures emanating primarily from one half of the brain. Today, remarkably, Jody is an effervescent, 13-year-old middle school student who earns straight A's and spends her spare time devouring Harry Potter.

Hemispherectomy patient Jody Miller, center, with parents Lynn and Al Miller.

On the weekend of July 19, Jody returned for the hemispherectomy reunion to see the surgeons, neurologists and therapists at Hopkins who had helped her along the road to recovery. Organized primarily by Jody's mom, Lynn Miller, and held every three years, the event attracted a record 170 people. Among them were 12 families whose children had undergone the procedure elsewhere. For these families, the reunion was especially meaningful, because it introduced them, often for the first time, to others who shared a similar, life-defining experience.

For all, it was a chance to get together with the doctors, learn from the experts and bond with others with whom they had so much in common. Among the highlights: a "get-acquainted" Friday dinner, a round of workshops for adults (including one on how to maintain a healthy marriage), a discussion and pizza party for teens, sessions for younger patients and siblings, and a Saturday evening picnic and pool party at a nearby swim club.

It was a decade ago, but Jody's father, Al Miller, remembers "all too well" those days leading up to Jody's daunting hemispherectomy. "It's all behind us," he said, "and nothing but a bright future lies ahead. At Hopkins, they're like family. It's not handshakes now, its hugs and kisses."

A Rare Birth Defect

A clown at the Bladder Exstrophy Seminar and Picnic.

For nearly 30 years, Johns Hopkins has been caring for children with bladder exstrophy, a rare, congenital birth defect in which the bladder forms outside the body. Today, under the direction of John P. Gearhart, chief of pediatric urology, the Exstrophy Center follows some 800 patients, probably the largest population of bladder exstrophy patients anywhere in the world.

Every year, many of these patients and their families return to Baltimore for the Bladder Exstrophy Seminar and Picnic. This past summer, the two-day event, held on the weekend of June 28 at Oregon Ridge State Park in Hunt Valley, attracted more than 300 people.

Friday night's round table discussions, facilitated by the surgical team, provided opportunities for parents to ask questions and share information. Saturday's seminars, led by surgeons, scientists, psychiatrists and Child Life specialists, focused on the latest medical and scientific advances and psychological concerns. One session was presented by adults with bladder exstrophy. Reassured parents gave these healthy, well-adjusted and successful individuals a long, heartfelt ovation.

For the patients, meanwhile, there were planned activities, including private rap groups for teens and, for younger kids, a rotating cycle of games, crafts and relay races, some of which employed all-too-familiar props. "In order to make children more comfortable with the medical procedures they face, they actually play with medical equipment," one parent explained. "It's not uncommon to glance outside on the field and see a half dozen kids running a relay race with bedpans in their hands!"

Activities like these help children associate Johns Hopkins, Baltimore and the Gearhart team with fun-not fear and pain. The weekend is a time in which parents, patients and physicians can interact with one another in a more relaxed atmosphere.

"When we transferred our son to Hopkins, we believed that we were sending him to the finest exstrophy center in the world," said a parent from Georgia. "Our belief is reinforced each year when we attend the picnic and learn how Dr. Gearhart and his team are pioneering research and techniques to manage bladder exstrophy. Through this event, Johns Hopkins has created an exstrophy community that serves as a lifeline for all of us."

Returning to Rehab

Top to bottom, Marty Shockley, left, greets therapist Stacey Bittner; George Remmers is coaxed from the chair; Teresa Dalton, center, with therapists Ann McCallum and Bittner.

Three years ago, Teresa Dalton lay near death on Meyer 7. Suffering from an exceptionally rare neuromuscular disorder, Dalton, 20, was almost completely paralyzed. All she could move was her head and her eyelids. But this past July 16, when Dalton stepped off the elevator on Halsted 3, the only visible trace of her illness was a slight irregularity in her gait.

Dalton had returned for the fifth annual reunion of the comprehensive inpatient rehabilitation (CIR) unit to see the therapists who had launched her on the road to recovery. There were shreiks or recognition as the CIR staff waited with open arms to reunite with the patients they had come to know.

"After three months on Meyer 7, I was admitted to the CIR in December 2000. I couldn't move my arms and legs, I couldn't sit up by myself, I couldn't do anything." Dalton recalled. "It was hard work. They made you push yourself." One month later, Dalton checked out of the CIR-on a walker. Today she lives a full life with her husband and 3-year-old son and works as a secretary. "I came a long way. They did a lot for me."

Looking tanned and fit after a recent mobile home trip across the country with her husband, Marty Shockley gazed down the long hall where she once had struggled to walk after battling a severe case of vasculitis. "It was absolutely the hardest thing I've ever done. 'Just one more time,' they kept saying. I wouldn't be alive today without their help."

George Remmers, who spent a month on the CIR after having a stroke, made the mistake of arriving in a wheelchair. His former nurse, David McAllister, promptly took it away. "This is a party! I'm a guest!" Remmers protested good-naturedly, walking to the refreshment table on a cane. "Sorry," said McAllister. "This is rehab."