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A BU staffer's story
Premature twins are youngest fundraisers

By David J. Craig

Eyeing her twins for the first time in the Neonatal Intensive Care Unit at New England Medical Center in June of last year, Jennifer Horgan did not experience the wondrous sense of satisfaction typically felt by a mother of newborns. Hours earlier, Kathleen Grace and Thomas Gregory, Jr., were delivered 14 weeks prematurely by an emergency C-section and weighed about two pounds each.

Jennifer Horgan, the administrative manager in Chancellor John Silber’s office, with two of her children, Kathleen Grace and Thomas Gregory, Jr., twins who were born prematurely on June 17 of last year. The Horgans are a poster family for the March of Dimes, one of 22 in Massachusetts. Photo by Fred Sway

"It was so scary," says Horgan, the administrative manager in Chancellor John Silber’s office. "They were tiny, without a bit of fat on them, and they could barely move. You just knew they weren’t supposed to be here yet."

At 16 months, Kathleen and Thomas now are relatively healthy, but the trauma of watching helplessly as they struggled for life inspired Horgan to help other premature infants. This summer, she volunteered to make hers one of 22 Massachusetts "ambassador families" for the March of Dimes, which entails time-consuming outreach and fundraising activities.

"I fully credit the March of Dimes with saving my children’s lives," says Horgan. "Without the research on premature infants that the organization has funded, my babies wouldn’t have survived."

Two little, too early

The Horgans knew little of what to expect when Kathleen and Thomas Jr. were born prematurely last year. "When I heard about preemies, I’d always pictured fairly normal babies, just small," Horgan says. But the size of Kathleen and Thomas Jr. was the least of their challenges initially.

Thomas Jr. had a particularly difficult birth and needed to be resuscitated. Because the organs of both babies were not able to function on their own, the infants were immediately placed on warming trays, where machines pumped air into their lungs, monitored their heartbeats, and fed them intravenously. A synthetic fluid called surfactant had to be delivered to their lungs through endotracheal tubes to keep the lung sacs from collapsing when they exhaled. Covered with IV lines and leads to measure their vital signs, the babies repeatedly experienced spells during which they would stop breathing and their heart rates would drop dangerously. At one point, Thomas Jr. suffered a burst blood vessel in his brain after going into respiratory distress. Both babies required numerous blood transfusions and drugs to help their organs adjust to life outside the womb.

"I couldn’t believe the danger they were in at first," says their father, Tom Horgan, Sr., a project manager at Lan-Tel Communications. "There wasn’t much joy involved, just concern. Every day it was a matter of life and death."

Every hour counted. Doctors told the couple that if the babies lived for 24 hours, their chances for survival were fair, and if they lived 72 hours, their chances increased to nearly 90 percent.

"When they were about 12 days old it was clear that they were going to live, but at that point you don’t know what their quality of life is going to be," Jennifer says. "One of the big risks was that they would be blind, so at first you’re hoping that’s not true, then that they won’t need major eye surgery, and then that they won’t need glasses at a very young age. In our minds, we sort of started making bargains."

Jennifer was bothered too by the fact that physicians did not know why she went into premature labor, and especially since she was perfectly healthy following the operation. "I wasn’t sick at all after the birth, which somehow made me feel worse," she says. "It was actually a wonderful pregnancy, and I really love being pregnant. Afterwards, I felt really empty inside."

Slowly, the babies’ conditions improved. Their heart murmurs responded to medication, they gathered strength enough to breathe on their own, and they gained weight. Soon they had outgrown the doll’s booties and hats that first clothed them, and after 11 weeks they left the hospital for the Horgans’ Marshfield home, healthy and without having had to endure any major surgeries.

Now, in the family’s living room, which often resembles a toy store at closing time, they can be found playing with their older sister, two-and-a-half-year-old Abby.

Kathleen, whose blue eyes glance down shyly toward her chubby cheeks when meeting a stranger, is beginning to walk. Thomas Jr., despite having battled illness almost constantly since coming home – 10 ear infections and 6 bouts with croup – giggles at his sisters when they tackle him for accidentally invading their play space.

"He is absolutely constantly smiling," says Horgan. "It’s a real mystery how he’s so happy, with all that he’s been through."

Looking forward

Jennifer and Tom Horgan know that they’re fortunate to have Kathleen and Thomas Jr. with them. As a result of their trials, Jennifer says, she is more patient and less likely to feel overwhelmed when dealing with her children.

But where once the Horgans were frightened for their children’s lives, now a duller, nagging anxiety has taken root. Both twins’ speech is delayed, and once a week Thomas sees a physical therapist, who is helping him learn to sit up on his own. And as with all premature infants, serious questions remain about Kathleen’s and Thomas’ cognitive development, which will not be answered until they begin school.

"They’re both making a lot of progress, and that’s what I try to focus on," Jennifer says. "But I do worry about when or whether they will catch up. My sister has a baby who’s almost a year old, and he does everything my kids don’t do. That’s really hard."

And it’s a concern that not everyone understands, Jennifer says. Immediately following her twins’ birth, she heard countless well-intended but misguided comments about babies who had been born prematurely.

"When we’d tell people proudly, but sadly, that we had our kids so early," she says, "I’d hear things like, ‘Oh, I know this person who was born and put in a shoebox next to the oven. He was fine.’ I think people just didn’t understand what we were going through."

Jennifer hopes that her work with the March of Dimes will help educate people about premature births as well as raise money. This month, she and the twins will visit local preschools to discuss differences among children with students and solicit donations from their families. In addition, the Horgans will help promote a WalkAmerica in Plymouth this fall. The family raised nearly $3,000 during a WalkAmerica in April, in spite of the fact that Jennifer’s days are consumed with trips to and from doctors and therapists. Last December she returned to work 25 hours a week.

"I have no time," she says, "but this is something I really have to do. Other families before us raised money that went into research on things like surfactant therapy, and that’s what we’re going to do for those who come after us."

To find out more about the March of Dimes’ work to prevent birth defects and infant mortality, or to volunteer, call 781-762-4747 or visit March of Dimes Birth Defects Foundation on the web.

7 February 2001
Boston University
Office of University Relations