Patrick Nolan’s story: Managing congenital heart defect from birth to adulthood

A fix for congenital hearts without another zipper scar

Approximately 40,000 babies are born each year with congenital heart defects — the most common type of major birth defect in the U.S. But, a new valve being used at the University of Michigan’s C.S. Mott Children’s Hospital Congenital Heart Center is helping patients delay or avoid multiple open-heart surgeries.

Patrick Nolan, left,hiking with friends.

Patrick Nolan, left, hiking with friends.

The new Melody Transcatheter Pulmonary Valve is inserted through a catheter into a vein in the patient’s leg during a heart catheterization, rather than an open-heart procedure. On Sunday, U-M’s Dr. Aimee Armstrong presented data to the American College of Cardiology that reaffirmed the safety and efficacy of the valve, which has been FDA approved for Humanitarian Use Device designation since Jan. 2010. Read here for more details on that presentation. C.S. Mott Children’s Hospital’s Congenital Heart Center was the first hospital in the state, and one of the first in the country, approved to use the valve in patients. 

25-year-old Patrick Nolan is one of those patients. Under the care of Dr. Armstrong, Patrick was able to get the heart valve he needed in 2011 without having to undergo yet another open-heart procedure. Today, he is a hard-working med student hoping to become a pediatric cardiologist, in part due to his experience as a cardiac patient and the dedicated doctors he’s met along the way. 

Patrick shares his inspiring story…

Patrick Nolan baby photo[1]“I obtained my first chest ‘zipper’ at just 1 day old. Again, at ages 2, 4, and 12, scars were added to the mural that was my chest. Born with transposition of the great arteries, ventricular septal defect and pulmonary stenosis, it seemed clear that my life would be consumed by doctors’ appointments, hospital visits and numerous open-heart surgeries. What was unclear at the time was how I would react to my heart condition as I became aware of it. How would I live with congenital heart disease?

During my pre-teen years, I was very energetic, playing left defense in hockey, a regular in junior golf and an all-star shortstop on my little league team. In my second life, as a pediatric cardio patient, I was constantly being reminded by my mother and my cardiologist that having a wonky heart was unique, and that being unique was ‘cool.’  As I got older I didn’t mind longer appointments, or letting echo-techs draw on my chest with their freezing cold gel pens. I eventually grew to enjoy visiting with my cardiologist and began making my ‘rounds’ in the hospital in order to stretch my legs, as my mom and I walked my IV pole ‘dog’ down the halls of Mott Children’s Hospital.

It wasn’t until my teens that problems began to ensue. ‘Checking’ became allowed in hockey, and the soft-cover baseball was now replaced by a real hardball used in the major leagues. Out of concern that I would be hit in the chest, my cardiologist limited my activities to ‘non-contact’ only. This left me with only one sport, golf, which I went on to play all four 4 years for my high school team.

Fast-forward a few years

I moved back to Michigan after graduating from college in December 2010, and it happened to be time for my yearly cardiology appointment.  After a routine EKG and echo, my cardiologist came back to my room to explain that I would need another surgery because the replacement valve I received at age 12 was becoming insufficient. After my initial shock settled, he further explained that there had been vast improvements in cardiac surgery since 2000 and, in fact, I wasn’t necessarily a candidate for open-heart surgery anymore. He told me about a new, experimental procedure called the ‘Melody valve’ that was being performed by only a handful of physicians in the U.S. One in particular was Dr. Aimee Armstrong at C.S. Mott Children’s Hospital.

When I first met Dr. Armstrong, I was studying for the MCAT (Medical College Admissions Test) and in no way concerned with having another heart surgery. It didn’t take long for Dr. Armstrong — conveying a potent mixture of confidence and compassion — to educate me on the reality of this procedure. At that time (2011), the Melody valve was only approved by the FDA under a humanitarian act, and I was to be U-M’s 23rd patient to have the procedure.

Back in the swing of things

The procedure took place on May 27, 2011, Memorial Day weekend.  I was amazed that on post-op Patrick Nolan recent photoday 8, I was back on the golf course. I was up and out of bed the same night of the procedure, and had nothing more than a little leg tenderness. And no stitches forming another zipper!

I’ve been following up with Dr. Armstrong since 2011 and I really appreciate her for being such a fantastic physician and human being. Growing up with congenital heart disease has provided many unique experiences that few others have had. While it would have been easy for me to feel depressed by the limitations it caused, I’ve never looked at it as an illness or a disease, rather, a blessing. I have always had my physicians, my mother and now Dr. Armstrong to keep encouraging me, keep pushing me to reach my goals. Currently, I’m a second year medical student, and in the next 8 years, I hope to finally practice as a pediatric cardiologist.”

Take the next step:

best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.


Frankel-informal-vertical-sigThe University of Michigan Samuel and Jean Frankel Cardiovascular Center is the top-ranked heart and heart surgery program among Michigan hospitals. To learn more, visit our website at umcvc.org.