A Parents’ Perspective…

from Practice Update, Winter 2004

Jacen and mom under the Christmas tree.

This past year marked Jacen Laughlin’s second Christmas. He’s 14 months old. As his parents are interviewed, he sits by the Christmas tree “unwrapping” a present in typical toddler fashion, paying more attention to the box and bow than the book inside. He plays peek-a-boo with the photographer, smiling and laughing. Then his mom, Melissa, tells just how miraculous the scene under the Christmas tree is.

“Jacen was born on October 1, 2002 , with hypoplastic right heart syndrome, pulmonary atresia and aortic stenosis. Max Mitchell, MD, Jacen’s surgeon, tried to prepare us for the worst. We talked of by-pass machines and heart transplants and at what point to say enough is enough. I don’t think most of the staff held out too much hope at that point. Dunbar Ivy, MD, Jacen’s cardiologist managed him through the night and the next morning, Jacen was still with us and we began to think he might beat the odds.”

On October 15, Jacen received a Blalock-Taussig shunt to increase the blood flow to his lungs. The next day Jacen arrested. Twice. His mother remembers those critical minutes in the cardiac intensive care unit at The Children’s Hospital: “Everything happened so fast. Within seconds there were a dozen people in the room. Though Jacen’s young life hung in a delicate balance, there was no panic. Everyone knew what to do and when to do it. I still can’t believe how quickly people came together. Jacen’s heart restarted. The next 12 hours would determine if our son had a chance at life. Weeks afterwards, the nurses told us Jacen was the first to ‘crash’ in the new cardiac intensive care unit, a dubious distinction.”

Mark Laughlin continues: “The doctors and nurses were upfront with us. They didn’t try to sugar-coat the situation. We knew Jacen was in trouble and what the odds were of his pulling through. We always knew what was going on and, though the news wasn’t good, knowing what was happening to our son helped us cope somehow. I think that that honesty and the staff’s trust in our ability to understand and make decisions helped give us the strength to get through the worst, even when they told us Jacen’s chances for survival were not good.”

Though his shift was over, Dr. Ivy stayed through that night. He and Shelly Miyamoto, MD, took turns at Jacen’s bedside throughout the long hours of waiting. “Dr. Miyamoto was so patient, answering our questions again and again,” says Melissa Laughlin. The nurses, too, helped us though those difficult hours. Melissa recalls a story related to her about night nurse Cathy Holt’s arrival: “When Cathy was told Jacen’s chances of surviving the night were pretty tenuous, her response was, ‘We’ll just see about that.’ That simple response demonstrated the determination and hope the nurses held that Jacen could make it.”

“Twelve hours passed and Jacen was still with us. In a strange combination of exhaustion and elation, we celebrated with staff. Then, another 12 hours passed. Despite the transfusions, dialysis and being listed as critical for a week, Jacen kept going.”

Both parents recall the compassion and faith of the doctors and nurses, “We felt that the staff were all personally involved in Jacen’s struggle and ours, as well. They understood and cared and never gave up. Knowing they were there for Jacen let us find time to go home to see Matthew and Trevor, Jacen’s older brothers. We can’t begin to tell Drs. Mitchell, Ivy, Chan and Miyamoto or Esther, Laurel , Chris, Cathy, Kim, Katie, Maggie, Stephanie and all the cardiac nurses how grateful we are. Jacen will have challenges throughout his life, but that life promises to be rich and full of love, and made possible because they were there.”

Jacen with mom and dad

Jacen went home the day after Thanksgiving 2002, but was back in the hospital the second week in December for more surgery. He was readmitted and spent four days in the cardiac intensive care unit. In January, he was back for a catheterization to determine how much damage the two cardiac arrests had caused to the left side of his heart. In February, he was listed for a heart transplant. Last spring, he was bumped down the list twice.

In July, Children’s doctors suggested that a provisional procedure could buy Jacen some time while waiting for a transplant, but when a diagnostic catheterization was done, Drs. Kak-Chen Chan and Dunbar Ivy discovered that the left side of Jacen’s heart had almost completely repaired itself. Later that month, Jacen received a Glenn shunt to begin the separation of pulmonary and systemic circulations in the heart.

Jacen has been home since July. In October, his family hosted a celebratory party for Jacen’s ongoing progress. Nurses from Children’s attended. Jacen’s mom, Melissa, says, “We never expected, nor wanted, to spend extended time at a hospital with our child. But I can’t begin to tell you how glad we are that we live in Denver and have The Children’s Hospital half an hour away. The medical care is the very best. Jacen will continue to need physical and occupational therapy which is closely coordinated with the cardiology care. But, above all, it is the staff who have made our little boy’s journey and ours triumphant.”