Don’t let his shy smile fool you. In his hometown of Lahore, Pakistan, 6-year-old Muhammad Butt is known by the nickname “Faiz the fighter.”
Faiz had long defied the predictions of local doctors who said the heart surgery he needed would be complicated and instead advised his parents to enjoy the time they had with him. But heterotaxy — a rare condition in which the heart isn’t properly formed — and other congenital heart defects were worsening his health. “I used to feel that if I held him tightly, maybe something would happen to him, so I was afraid all the time,” his mother, Sania, recalls.
Sania and her husband, Asad, were resolute they would find a surgical team that could repair their son’s heart. “What the doctors said only made us more determined to find a hospital where he could be treated,” she says.
Mom vows to not watch and wait
A prenatal ultrasound had revealed Faiz would be born with a heart condition, but its entire scope wouldn’t be clear until years later. Its symptoms, though, were evident not long after his birth: breathing difficulties, blueish skin tone, and fatigue. When Faiz was older, he would say to Sania, “Why isn’t your heart beating fast? My heart is beating fast.”
Faiz was 4 when the local doctors said they couldn’t perform heart surgery, citing high pressure in his lungs. Sania and Asad reached out to hospitals in England and India, including one that said Faiz would need heart and lung transplants.
“We got ‘no’ for an answer everywhere, but we couldn’t give up,” Sania recalls. “I watched videos of parents of children with heart conditions, and they also couldn’t get their child proper care. Days would pass and they didn’t know what would happen next to their child. I vowed I would not wait and watch. I would fight back.”
The first cardiac surgeon to offer a solution
Sania’s search for treatment also led to a video of Dr. Sitaram Emani — cardiac surgeon and director of the Complex Biventricular Repair Program at Boston Children’s Benderson Family Heart Center — explaining how he and his colleagues treat children and adults with complicated heart conditions. She emailed Dr. Emani, who reviewed Faiz’s medical history and gave the family the “yes” they had waited more than two years to hear.
In November, Faiz and his parents came to Boston Children’s, where an MRI confirmed the full extent of his condition: Aside from heterotaxy, he had a complex combination of heart defects, including double outlet right ventricle, unbalanced atrioventricular canal defect, pulmonary vein stenosis, and a rare defect in which a thin membrane created three atrial chambers instead of two. These defects lowered the levels of oxygen in Faiz’s blood and caused his many symptoms.
Dr. Emani didn’t just explain Faiz’s condition. He detailed how he and his colleagues, including Dr. Sunil Ghelani, a cardiologist, would treat Faiz. “Everybody was always talking about his heart defects, but only one person gave us a solution,” Asad says. “Dr. Emani explained how they would do it, actually drawing it out for us on paper. He said, ‘We can do this.’”
Faiz goes home healthy and huggable
Faiz had two procedures: cardiac catheterization for the clinicians to better understand how his heart was functioning and, a few days later, biventricular repair to create two functioning ventricles. To make surgery relatable to Faiz, his parents looked to his favorite superhero. “We told him that Dr. Emani would make him stronger, like Iron Man,” Sania says. “After surgery, Dr. Emani would say to him, ‘Hey, Iron Man.’”
It was those “down-to-Earth” touches from Dr. Emani and the clinicians who treated Faiz — including the nurse who brought an exhausted Sania water and told her to eat and catch up on sleep — that confirmed the family had come to the right hospital.
Sania and Asad are overjoyed Faiz is healthy. His breathing is measured and his heart beats normally. He’s also gaining energy, just in time for a reunion back home with his 10-year-old sister, Fajar, and 2-year-old brother, Fahaam. They like to play together with toy cars and watch movies like “The Avengers.” Faiz’s parents hope he can soon return to school and eventually pursue swimming and other sports.
For the first time, Faiz’s parents are confident about his future. “Dr. Emani and everyone at Boston Children’s are such a blessing to us,” Sania says. “Now I can hug Faiz comfortably. I can finally hug him.”
Learn more about the Benderson Family Heart Center or schedule a second opinion about your child’s cardiac diagnosis.
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