Five minutes. That’s how long Joey Williams was expected to live – IF he made it to term, which his doctors were not expecting. His mother, Rebecca Williams, received the prognosis when she was 21 weeks pregnant.
Prenatal testing had already revealed that Joey had Down syndrome and a significant type of congenital heart disease in which one of the sides of his heart was underdeveloped. His diagnoses included atrial septal defect and ventricular septal defect.
When Rebecca heard the news of her son’s meager life expectancy, she was devastated. Yet she also felt a well of unconditional love grow deep inside her. “At that point,” she told me, “I really just opened up my heart…I finally felt free to make decisions with my heart.”
She and her husband Christopher chose to move forward with the pregnancy and arranged a home birth. “If he was only going to be alive for five minutes, I wanted those moments to be at home,” Rebecca says, her tone equally gentle and firm.
On March 12, 2013, Joseph Williams was born. Minutes passed…hours passed… days passed. Although he had defied the odds, Joey ended up in Albany, N.Y-area ER when he was just one week old. There he had emergency surgery, and his parents were told that the only path available was a Fontan procedure to redirect blood flow within the heart.
On an online forum for parents of children with Down syndrome, Rebecca had connected with a mother whose daughter had the same diagnosis as Joey. “She was the one who introduced me to the Heart Center at Boston Children’s Hospital,” Rebecca says, “And I am forever grateful for that.”
Within months, Joey was in Boston for his first sedated echocardiogram, an ultrasound exam to view his heart, with Gerald Marx, MD. That summer, he had his first cardiac catheterization and surgical repair to close the holes in his heart. In the fall, Joey was again admitted to Boston Children’s. This time, he stayed for a few months and needed a stent in his pulmonary artery; the stent was placed via another catheterization. He was discharged Christmas day, 2013.
Although it was a trying time for the whole family—Mom, Dad, Joey and older brother Malcolm, then 3—Rebecca speaks about the experience with positivity and gratitude. “We come here, and we just know we are in the best possible hands,” she says. “I would tell anyone to come to Boston Children’s.”
Today Joey is a vibrant, playful toddler whose heart is healing wonderfully. He enjoys play wrestling his brother, an activity Rebecca describes as “mostly hugging and rolling around on the floor.” After a check-up catheterization this winter, Dr. Marx said that Joey could lead nearly a normal life with his current cardiac status.
Getting a second opinion was key, says Rebecca, and she trusts the Heart Center so much that she takes Joey here for blood draws—a four-hour drive, round trip. “They are actually the only ones who can get good draws from him!”
“The doctors here [at Boston Children’s] are not simply focused on getting Joey through to the next surgery,” Rebecca says. “It is always about giving him opportunity and keeping him well. One of the most important things that Marx said was that his goal was to keep our family together. How amazing is that?”
Rebecca’s advice for other parents is: “Be present in every moment, and listen to your own heart when you’re making decisions for your child’s heart.”
Learn more about treatments for congenital heart defects at Boston Children’s Heart Center.