Heart to Heart: Why This Mother and Daughter Share the Same Cardiologist
Cook Children’s Heart Center is home to patients of all ages
When Amy Suson began her journey with Cook Children’s Cardiology program more than 30 years ago, she never expected her baby daughter, Madilyn, would someday join her on a similar path.
Amy was born with hypoplastic right ventricle, severe tricuspid valve stenosis and transposition of the great arteries and had a shunt (Blalock-Taussig (BT) placed at a little over a year old. At the age of 3, her family took her to Birmingham, Ala. for the Fontan procedure. The Fontan is the last of a series of three surgeries to rebuild the heart and redirect the way the blood flows.
The fact that Amy had to travel for the Fontan shows how far the Cook Children’s Heart Center program has grown over the past three decades. This was before Vincent Tam, M.D., took over as medical director of Cardiothoracic Surgery. Today, he diagnoses and treats patients with some of the most difficult heart and cardiovascular defects.
“I finally graduated to Dr. Pilgrim when he began working at Cook Children’s since he specializes in adult congenital heart disease,” Amy said. “I had the conversation with him about a safe way I could become a mother. He suggested IVF (in vitro fertilization) with a surrogate would be a safe option. Since I have lived a very healthy and normal life as a cardiac kid, I thought this would be a safe option to keep my good health intact. I didn’t want to put myself or my child in danger.”
Dr. Pilgrim believes one of the more rewarding aspects of his job as the medical director of the Adult Congenital Heart Disease Program at Cook Children’s Medical Center is making sure that adult survivors of congenital heart disease have an opportunity to realize their desire to start and raise a family.
“While pregnancy in this population is certainly not without challenges, a safe and healthy pregnancy and delivery is entirely possible for most women with congenital heart disease with appropriate oversight,” Dr. Pilgrim said. “Pre-pregnancy risk assessment and management of high risk pregnancies due to maternal congenital heart disease has become an increasingly important aspect of our program. Understanding that individuals with congenital heart disease have an increased risk of having children with congenital heart disease underscores the importance of fetal screening for these high risk mothers”.
Amy’s sister-in-law, Amanda, agreed to become the surrogate. Early in her pregnancy, doctors found that Rusty and Amy Suson’s baby girl would also face a heart defect. A fetal echocardiogram performed at Cook Children’s found something wrong with the baby’s pulmonary artery. Dr. Tam met with the family and moved forward to a 39-week induction.
As soon as Madilyn was born, she went straight to the NICU at Cook Children’s.
Amy was relieved to find that Dr. Pilgrim was on call that day to care for her daughter. Dr. Pilgrim checked on Madilyn, then ordered and read her first echocardiogram. He then made the diagnosis of pulmonary atresia with a ventricular septal defect (hole in the wall of the heart). “It was on that day that I asked him if he would be willing to take Madilyn on as a patient too and he agreed,” Amy said.
Madilyn had her first open heart surgery at 3 days old and will have another one likely in April.
“Eventually, Madilyn and I will have mother-daughter joint cardiac checkups,” Amy said. “As a patient of Cook Children’s and part of their cardiac family, I knew Madilyn would be in good hands. The team in the Cardiac ICU and step down did an amazing job. I know that Madilyn is getting the best possible care.”
Get to know Scott Pilgrim, M.D.
The brilliant advancements in pediatric medicine and surgery mean that more and more children with congenital heart disease are not only surviving, but growing up to become adults who are leading full lives. Dr. Pilgrim helps them all the way into adulthood. As medical director of the Adult Congenital Heart Disease (ACHD), he leads one of only a few formal programs nationwide to offer inpatient and outpatient care for teen and adult patients with congenital heart disease.
Dr. Pilgrim was initially drawn to pediatric cardiology at an early age, after his younger sister endured two open heart surgeries for congenital heart disease. As she recovered, his interest in pediatrics and cardiology piqued. Reflecting on that personal experience he says, "You have to listen to what patients are saying and be very observant. You have to pick up on unspoken vibes. You have to watch how a child interacts with their parents and family. This will help greatly with your treatment of them."