Kristin’s story: From open heart surgery patient to child life specialist

KD graduation with parents

There’s a saying: “Life’s roughest storms prove the strength in our anchors.” I have faced many storms in my life, and my anchors have grounded me with hope and strength.

I was born with complex congenital heart disease. By the time I was 36 hours old, I had been diagnosed with an atrial septal defect (ASD), ventricular septal defect (VSD), double outlet right ventricle, left and right ventricles reversed, dextracardia, mitral valve regurgitation and pulmonary stenosis. For many, this sounds like a long laundry list of defects, but for me and my family it became everyday life.

At 10 days old, I underwent my first cardiac catheterization at Boston Children’s Hospital. One week later John Mayer, MD, performed a modified Blalock-Thomas-Taussig (BT) shunt procedure. This provided a temporary fix to increase the oxygen to my blood. At 16 months old, I had my first open heart surgery, once again performed by Mayer. This was considered my “big corrective surgery.” It was a Rastelli procedure, which surgically corrected the ASD, the VSD and the flow of blood to my heart and lungs. After that procedure, I returned to life as a typical toddler.

As a child, I knew that my heart was different. I had a scar on my chest, and I went to visit my cardiologist once a year, but this never stopped me. My parents always encouraged me to try something new. I took dance classes, swimming lessons, tried gymnastics and soccer, joined Girl Scouts and performed in musicals.

My doctors expected that I would need another open heart surgery. As time passed, I was still doing great, and the surgery they thought I would need in kindergarten was postponed until fourth grade. That was when I had to face my heart disease in a serious way for what felt like the first time.

As a 10-year-old who had led a pretty typical life, learning I needed open heart surgery was incredibly scary. It didn’t feel like anything was wrong with me, but my doctors were telling me differently.

Stress test effects

The pre-operative stress test proved to be my biggest challenge. I was told to walk on the treadmill to “check my heart,” but no one fully explained what this would feel like. As the test continued, I became increasingly tired and kept asking to stop. I was told that stopping was not an option, and I did not understand why; I did not understand that they were pushing me to test my endurance. I still remember thinking that this test was never going to end, I was going to be running forever, my legs were going to fall off, and I was going to die.

KD at hospital with friendWhile the surgery was a success, for the first time I really felt the emotional and psychological scar that congenital heart disease can produce. My experience with the pre-operative stress test left me nervous that the same out-of-control feeling would return. Over the following years, I struggled to find the balance between pushing myself and knowing it was OK to feel my heart beating harder. Having a strong support system was key to helping me persevere through this challenging time.

As I grew older and thought about choosing a career, I decided that I wanted to help children who face medical challenges and enrolled in a program to become a certified child life specialist. I moved to New York City, landed a job, found an apartment and began my degree program. One semester before graduation, I had completed my internship and was well into my job search, with an interview with a New York City hospital.

Then my life turned upside down.

On January 21, 2014, I went into atrial fibrillation. I called to my mom who was in the next room, and she says my pulse reached upwards of 180 beats per minute. I passed out and woke up in the local emergency room confused, scared, upset and being readied for transport to Boston Children’s.

Back to Boston Children’s

Never have I been more relieved to be at Boston Children’s and see the faces of my extraordinary doctors. The hug, determined look, and “we are going to figure this out” from Anne Marie Valente, MD,  helped me to relax. Things were under control.

The coming weeks truly challenged my strength and my “anchors.” I had one semester of graduate school left, a job prospect on the line and a certification exam to prepare for. I had my life ahead of me, and being hospitalized was not in the plan.

In February, I had the biggest and most complex surgery of my life. Mayer replaced my mitral valve, aortic valve and my artificial conduit. The procedure took 14 hours.

KD at Sox with friendBut not even complex open heart surgery could put a damper on my determination! A few post-surgical complications tried to stand in my way, but I was determined. I Skyped into my classes in New York first from my hospital room and then from my parents’ home. Congenital heart disease, surgery and atrial fibrillation were not going stand in my way.

On May 15, 2014—11 weeks after open heart surgery—I graduated with a Master of Science in child life. The feelings I had walking down that aisle—reflecting on the past months, seeing my family, my professors and classmates—were overwhelming. My mom snapped a photo, and we shared it with my doctors at Boston Children’s. Their responses of pride, amazement and support were the icing on my cake. This past year has shown me that I have incredibly strong anchors: myself, my parents, my family, my friends, my doctors and my faith. With this strength, I was able to pursue my dream. Today, I am a certified child life specialist and work for an agency that provides support and education for families who have recently adopted a child.

I am forever grateful for the care that I have received and continue to receive from Boston Children’s. I have the best doctors and nurses in the world. They saved my life and supported me more than they will ever know. Thank you to all of the doctors and nurses of Boston Children’s who helped make my dreams a reality.

KD skiing