Heart Center

Due to Parker’s condition, doctors said he required either three open heart surgeries or a full heart transplant. We choose the three surgeries because Children’s had a reputation of successfully performing surgery in that way.

Parker six weeks after his second open heart surgery

Originally, Parker was supposed to come home between the first and second stage of his heart operations, but unfortunately he didn’t do well after the first surgery and needed to remain hospitalized with the support of the hospital equipment and medicine in order to survive to the second stage.

Parker had the second open heart surgery on March 3, 2008. This was one of the earliest stage II surgeries performed by cardiac surgeon Dr. Sitaram Emani, who preformed Parker’s operation.

Thanks to everyone at Children’s, after nearly 15 weeks in the hospital, Parker was finally discharged and able to come home for the first time in his life.

Parker is now home and he receives eight different medications, 16 times throughout the day. His next open heart surgery will be sometime between Thanksgiving and Christmas of this year. Eventually, Parker may need a heart transplant, but we are hopeful this isn’t for years to come.

A bright future requires eye protection

Because of Parker’s condition we have learned to cherish each and every moment. Life is no longer about milestones, but about the moments. The difference between good days and bad days no longer seems so important; we are just thankful for the days.

We are forever grateful for the first class care our son has received at Children’s; we truly felt he couldn’t have been in better hands.

The entire staff was amazing, and the dedication I felt from Dr. Sitaram Emani and Dr. David Brown goes beyond words. We were at Children’s for 95 straight days and I felt like they were always available to us for assistance, guidance or to answer our questions. They never made me feel rushed or that my concerns weren’t valid.

Seeing their dedication to and passion for helping children made me want to make sure all future parents of children with heart conditions are aware of the amazing care their baby can receive from Children’s Hospital Boston.

When I first received Parker’s diagnosis of HLHS I had no idea what a congenital heart defect was, never mind what HLHS was. When I left the doctor’s office that morning in tears, the only thing I had was a tissue with hypoplastic left heart syndrome written on it.

Casey and her son Parker after a 15 week stint at Children's

Through our personal journey I’ve learned there just isn’t enough awareness or funding for research for CHDs. I’m amazed that the cardiologist we first saw in New Hampshire who diagnosed my baby couldn’t provide any information about his condition. I think most of my fears stemmed from the lack of education on the CHD and the fear unknown.

As a result, I have made it a life goal to raise awareness for CHDs so other expectant parents aren’t as lost as I was. I’ve contacted many people, medical professionals and organizations in attempts to open the lines of communication about the dangers CHD.

Thanks to work I’ve done with New Hampshire Governor John Lynch, this past February 14 was declared CHD Awareness Day in my home state. Currently, I’m working with New Hampshire State Representative Lynne Blankenbeker on having a pulse oximetry test (which could help detect signs of CHD in babies and save lives) added to medical screenings of all newborns born in New Hampshire.

While I’m glad to have the opportunity to be a part of the fight against CHD, I am most thankful for the work and dedication of Dr. Emani, Dr. David Brown and the entire staff at Children’s Hospital Boston. They have given my son a chance at life, and I could never fully repay them— I am truly blessed to have Parker and my thanks goes out to Children’s for keeping him in my life.