Stories about: Dr. Mark Kieran

Pulmonary vein stenosis: A clinical trial in Jack’s juice glass

Jack, who has pulmonary vein stenosis, is pictured sitting on the back deck at this family homeAt just 6 months old, Jack Marquis was suddenly given four weeks to live. After he was born with complex congenital heart defects, Jack’s doctors in California had performed two open-heart surgeries that they thought would save Jack’s life.

But just when they thought he was out of the woods, Jack’s condition suddenly began to deteriorate rapidly.

“On top of everything else, we learned he had a rare condition called pulmonary vein stenosis,” says Jack’s father, Andrew.

Read Full Story | Leave a Comment

Abigail’s journey: A trip to Boston makes tomorrow possible

20151012_AbigailsStory-35 (2)From the time Erika Jones was 30 weeks pregnant, she and her husband Stephen prepared for an excruciating eventuality. The Jacksonville, Florida, couple was told their daughter would die before or shortly after her birth. They arranged for pediatric hospice before Abigail was born. They made a decision tree factoring in clinical scenarios from intubation to a do-not-resuscitate order. They planned to scatter Abigail’s ashes on a Florida beach.

“We didn’t plan for this scenario,” says Erika, quietly glowing and cooing at the healthy newborn in her arms.

When Erika was pregnant, an ultrasound detected a large mass — thought to be a highly malignant brain tumor — in the left hemisphere of Abigail’s brain. Erika was referred for a fetal MRI, which led specialists to diagnose Abigail with a fatal brain tumor.

Read Full Story | Leave a Comment