Fort Worth, Texas,
14:45 PM

Scar for life

How his sister inspired doctor’s treatment of adult congenital heart disease

Dr. Scott Pilgrim’s resumé proves he’s the man to lead the Cook Children’s Adult Congenital Heart Disease (ACHD) program. But it’s his childhood that makes his care special.

Along with his medical degree, Dr. Pilgrim has completed a combined internal medicine and pediatrics residency, followed by pediatric chief residency at Maimonides Medical Center in Brooklyn, N.Y. His fellowship training in pediatric cardiology was completed at Cohen Children’s Medical Center with the North Shore-Long Island Jewish Health System.

Impressive indeed, but long before the tedious hours of study and hard work, Dr. Pilgrim’s career path began to take shape at a very young age. See, Dr. Pilgrim grew up with a congenital heart disease patient. His younger sister, Stephanie, was born with congenital heart disease, and she has the scar on her chest to prove it! Congenital heart defects represent the most common birth defect in children and occur in approximately 1 in every 100 children born.

Today, Stephanie is 35 years old, married and has kids, looking much like the patients you would see in the waiting room at Cook Children’s Adult Congenital Heart Disease clinic. In fact, conservative estimates predict that there are nearly 1.3 million adults with congenital heart disease in the United States with about 1 in 150 adults being affected. There are now far more adults than children with congenital heart disease in the US.

It makes perfect sense for Dr. Pilgrim to make this his career focus, right? Well, maybe, for everyone but Dr. Pilgrim. At least, it took him a little while to realize treating ACHD patients was his calling. ““There was a great deal of angst in choosing my career path” he said, chuckling. “I really wanted to be able to apply my internal medicine training to a pediatric subspecialty career path that would allow me to assist in the transition of adolescent and young adult patients to the adult medical arena. I was really drawn to the world of intensive care early on in my residency training, but I loved building long term rapport with the patients and their families in the outpatient setting as well.”

Toward the latter half of his medicine-pediatrics residency, Dr. Pilgrim finally latched on to the idea of pursuing a career in adult congenital cardiology. “Congenital heart disease was fascinating to me in medical school. I was drawn to the complexity and singular nature of each defect and the associated repair. As time progressed, I learned of the growing need for ACHD specialists for a large, vulnerable population with a noted care gap. This field has proven to be the perfect fit for me.”

Once he decided this was the right direction for him, Dr. Pilgrim has never looked back. After all, these are the patients he can identify with like no other. He grew up with one.

“My sister grew up with a scar on her chest. As kids, we called it her “zipper”. We, like many patients today, said, ‘It’s fixed! There’s nothing more to be done’. However, in many cases that is simply not true. Surgery is rarely a cure and most congenital heart defect survivors need lifelong specialized care.”

But Dr. Pilgrim and his colleagues know that many adolescent and young adult patients don’t realize the severity of their heart problems, or at the very least, that they need continued care. Most patients were diagnosed in infancy and don’t remember their surgical repair. Many have dropped out of care for a variety of reasons. “Much of my job revolves around providing education to the patient about their heart disease so that they can develop autonomy and learn to advocate for themselves as they grow older.”

Dr. Pilgrim explains that adults with congenital heart disease remain at risk for long term complications including heart failure, abnormal heart rhythms, pulmonary hypertension and premature cardiovascular death. On top of that, adult onset disease such as hypertension, obesity, diabetes and acquired cardiac disease begin to interplay with their unique physiology. Many ACHD patients will require additional surgical intervention or added medications, even if they had a successful repair as a child. This underscores the need for specialized care. However, fewer than 10% of all adult congenital heart disease patients receive the recommended care in a specialized center.

Congenital heart disease has dramatically changed the landscape of another field in cardiovascular medicine, that of pregnancy and heart disease. Rheumatic heart disease has been replaced by congenital heart disease as the most common heart disease in pregnant women in the US.

“A lot of women show up to the clinic, just like my sister, wanting to become pregnant and wanting to know the risks to themselves or the potential risks to the fetus,” Dr. Pilgrim said. “At Cook Children’s ACHD program, we provide women of child bearing potential with important education regarding birth control options, pre-pregnancy counselling and risk assessment. Women with congenital heart disease who are already pregnant are followed in conjunction with the obstetrician, maternal fetal medicine, fetal cardiology and anesthesia teams with a coordinated delivery plan. We can counsel and treat the woman with the heart problem, while also taking any necessary precautions for the baby after birth.”

But Dr. Pilgrim stresses that there is plenty of optimism for the ACHD patient to live a full life despite their heart disease.

“Too often we find that these individuals become defined by what their disease is rather than who they are as a person” Dr. Pilgrim said. “In some ways their defect may limit some of the things they can do, but it shouldn’t limit their happiness or ability to live a fulfilled life, with the proper treatment. I think that’s the most optimistic message that I can give patients in the community. Through education and proper surveillance in a specialized ACHD center, you can live an active and healthy lifestyle.”

Dr. Pilgrim speaks from the example of how well his sister is thriving as an adult with ACHD. Especially, with the right program, like you will find at Cook Children’s, caring for you.

More about Scott Pilgrim, M.D.

  • Dr. Pilgrim spends his free time with his wife and three beautiful children.
  • He is particularly involved in musical pursuits, having performed with the 6-time Grammy Award Winning Brooklyn Tabernacle Choir for 12 years.
  • He is also a sports fanatic, enjoying baseball, football, basketball and anything else involving healthy competition.
  • Yes he knows about the movies and graphic novel, Scott Pilgrim vs. The World.



The ACHD program at Cook Children's

At Cook Children's, we care for the needs of patients with congenital heart disease from the moment they're born, and we stay with them all the way into adulthood. Our Adult Congenital Heart Disease (ACHD),  is one of only a few formal programs nationwide to offer inpatient and outpatient care for teen and adult patients with congenital heart disease, because adulthood, like childhood, should be as simple as possible.