Heartfelt Gratitude : Parents Recognize Sacrifice by Others Let Their Son Thrive

Lori Sullivan watches with pleasure as her 17-month-old son, Trent, smiles at himself in a mirror, then reaches for the bright orange nose on a puppet. Each squeal of delight from the brown-haired boy widens the smile on Sullivan’s face.

Trent’s actions are hardly unique, but Sullivan will never tire of watching the youngest of her three children perform the most ordinary tasks.

Once, Sullivan and her husband, Craig, wondered if Trent’s body would ever be free of the machinery that kept blood circulating through his veins and oxygen pumping through his lungs. But today, exactly one year after Trent underwent a heart transplant, the Sullivans and their two other children, Garrett, 7, and Jaclyn, 5, are finally ready to celebrate a dream come true. They will do so, however, knowing that their dream was realized only because another family’s nightmare came true.

“Your throat drops to your stomach when you realize someone else’s child died to save yours,” Lori Sullivan said. “I will never think of Trent without being reminded of their gift.”

Adds Craig Sullivan: “My overwhelming feeling was gratitude that the other parents cared enough about children they could do this, let something good come out of (their) child’s death.”

Just 27 inches tall and weighing less than 17 pounds, Trent is about the size of an average 8-month-old child. His gross motor skills are far below the norm for someone his age, and he lags behind in other developmental areas as well.

But with the help of physical therapy sessions three times a week, Trent has developed to the point that he can sit up unassisted and can say several phrases. He has gained almost a pound a month since he received his new heart and has become much more alert and responsive. “When he come home after the transplant, he was basically a newborn,” the mother said. “When you consider that, he has really come a long way.”

The first signs that something was wrong with Trent came moments after he was born at Placentia Linda Community Hospital on July 9, 1993. The obstetrician noticed the boy was having difficulty breathing and had poor skin color.

Trent was transferred by ambulance to Children’s Hospital of Orange County, where doctors discovered he had a condition called pneumothorax, which is caused by a hole in one of his lungs.

At first, the diagnosis came as a relief, because such holes often heal without treatment. But after it became apparent that Trent’s hole wasn’t healing, a tube was inserted into his chest. It was then that doctors discovered Trent’s heart was not working properly.

“It was a real shock,” said Craig Sullivan. “With two other healthy kids, you just never think something could go wrong. It’s something that happens to other people.”

After Trent spent three weeks in the neonatal intensive care unit, the Sullivans finally took home their 6-pound baby, along with a list of heart-failure symptoms to look for.

Four months later, Trent was readmitted to CHOC after Lori Sullivan detected six of the symptoms she’d been watching for each day. For the next 10 days, Trent was hooked up to a heart and lung bypass machine. On Dec. 9, the Sullivans decided to place Trent on a national organ recipient list. Less than six hours later, they got the call that a heart had been found.

“The first thing that races through your mind is that somewhere a baby has died,” Lori Sullivan said. “But then I just had to focus on Trent. Maybe this would mean our baby will live.”

Trent was transferred to Loma Linda Medical Center in Riverside, where a team of surgeons removed his tiny, malformed heart and replaced it with one that had been removed just hours earlier from an infant in Chicago.

All that the Sullivans know about the donor family’s situation is that the child was within two months of Trent’s age.

“I sent them a thank-you letter with a picture of Trent so they could see how well he is doing,” Lori Sullivan said. “We haven’t heard back from them but I like to think my letter has helped them, even if just a little.”

The Sullivans will celebrate today with a party to mark what they call Trent’s “rebirthday” and the fact that by going a full year without rejecting the new heart, their son has a good chance of leading a normal life.

“It’s a big hurdle to clear,” said Dr. Jon Kramer, Trent’s pediatrician. “The longer he goes without rejection, the better his chances are. At this point he’s doing great.”

As pleased as he is with the milestone, Craig Sullivan has his own in mind.

“I’m looking forward to the day when I can take him snow skiing,” Sullivan said. “When I can put him on skis with Garrett and Jaclyn, that would be a big deal.”