“Look what I did Mommy!” I have heard those words a few thousand times in the past ten years. They typically follow one of Victoria’s self-taught accomplishments like learning to write her name, tying her shoes, and playing the harmonica. Somehow, she achieved all of the above without help from an adult. Victoria began life determined to succeed and nothing has changed since then. Victoria’s inner strength and relentless pursuit of independence has not only allowed her to charm anyone who crosses her path, but it has also kept her alive. My beautiful daughter was born on a warm summer day in July of 1997. The excitement of her birth turned to sadness with our doctor’s diagnosis of her malformed valves, narrowed aorta, and multiple holes in her heart. Specialists from Children‘s Hospital of Philadelphia informed our family that complications were severe and life threatening. We could take Victoria home so she could get strong enough to survive life-saving, open heart surgery. Within her first month of life, she fought through the perils of heart failure, experienced her first open heart surgery and gained enough weight to come home with her family. We knew right away that Victoria was an extraordinary child.

As she grew for the next two years, Victoria spent her time capturing the hearts of everyone who met her. At the grocery store people would always compare her to Shirley Temple and Victoria played the part well. It seemed as though she was born with the ability to make people smile.

Victoria continued to live life as though nothing had happened to her. However, that was not always as easy for those who loved her. My husband and I crossed our fingers before every visit to the cardiologist, hoping that this would not be the visit when we would schedule her next surgery. That time did eventually arrive in June of 1999. At 23 months of age, Victoria endured her second open heart surgery. This time, the procedure replaced both her pulmonary and aortic valve. The intricate intervention was performed by world- renowned Dr. Thomas Spray, the same surgeon who completed her first surgery. Once again, Victoria amazed everyone with her immeasurable strength. She was sitting up and asking for breakfast the very next morning.

The next eight years of Victoria’s life were surgery-free. She started kindergarten, took dance classes, played soccer and softball and grew into a fine young lady. Considering all that Victoria was doing, we tried to keep her cardiac issues in the background. We wanted her to live normally and not to be known as “the kid with heart problems”. Most of the time, it would take months for someone to realize that she had a cardiac history. If it was not for her chest scar, most people would not know. Our family is proud of this because it has allowed Victoria to grow up just like any other child.

However, events of this past year made it impossible to hide Victoria’s condition from her classmates, teachers and friends. Her cardiologist, Dr. Paul Stephens confirmed that Victoria had started to outgrow some of the work that was done in 1999. Our family prepared for Victoria’s third surgery that was scheduled for January. We all knew it would be different this time. Victoria was old enough to inquire about her procedure, recovery, and chances for survival. Now we all had the same fears and concerns. But it was our job as her parents to present her with the facts while encouraging her to be strong. We turned to our faith to soften the anxiety of the unknown. But once again, it was Victoria who became the teacher, the coach, and the champion.

She never once complained about the pain. Instead she concentrated on being strong enough to walk into the playroom in the Child Life Department. There she would be able to play air hockey, draw pictures, make crafts and mail her friends and family. Within 48 hours after surgery Victoria was beating her dad in air hockey. Her recovery was another success story.

When asked about having open heart surgery at such a young age, Victoria says, “It wasn’t all that bad, I would do it again if I had to.” She credits the Child Life Department for making her time in the hospital not just bearable, but actually enjoyable. As her parent, I can help heal her wounds and dry her tears but there was one thing I was unable to do for her. Victoria needed to feel normal. I cannot thank The Child Life Department enough for doing just that for my daughter. While the best doctors in the United States were taking care of the medical aspects of my child’s care, the Child Life Department was making sure my little girl felt comfortable, welcomed, and perfectly normal even though it was for just moments at a time. Thanks to the Child Life Department, a few moments of normalcy quickly turned into a ride down the elevator and out the door towards home.

Unfortunately, few people realize that the Child Life Department even exists. But for families who are faced with childhood medical concerns, it quickly becomes a lifeline. Sherry Polise, Child Life Specialist at the Children’s Hospital of Philadelphia, describes the mission of Child Life and all it has to offer for families. “The Child Life Team, at The Children’s Hospital of Philadelphia, consists of Certified Child Life Specialists, Music and Art Therapists, Teachers and other individuals that all work for one common goal, to normalize the hospital experience for patients and families. The hospital is often a strange and overwhelming environment for children. Yet, through play, art, and music, this department brings comforting, familiar and fun things into the child’s hospital life. We strive to make sure kids can still be kids, despite their hospitalization.” Polise and her coworkers are able to help ease the pain of hospitalization and they do so with grace and integrity. “Any 10 year old, even a particularly brave one such as Victoria, has a tough road ahead of them after open heart surgery. The road includes countless blood draws, painful walks after surgery, and plenty of icky tasting medicine! Here at Children’s Hospital, my team and I work with doctors and nurses to ensure patients, like Victoria, receive a full range of care to support them both physically and emotionally.”

Victoria is now back to school, asking tons of questions and periodically forgetting her homework just like the other kids her age. Her father and I could not be happier. We have a lot to be thankful for this year. We are thankful for our family and friends who sat with us in the waiting room and called every hour on the hour, the nurses who cared for Victoria as if she was their own, the surgeons and doctors who brilliantly made use of their God given gifts, and the special people who work in the Child Life Department at Children’s Hospital of Philadelphia. They are the unsung heroes who are just as vital to a child’s recovery as the surgical team. Every moment we share with Victoria is a testament to the compassionate human spirit that is so perfectly shared by every employee at Children’s Hospital of Philadelphia.

Visit Kids Health Galaxy, our kids Web site, to prepare your child for a visit to the hospital. www.Kidshealthgalaxy.com