A baby’s heart is tiny—typically strawberry-sized. But before Baby Damian was born, doctors discovered his heart was “out of place”—a one-in-5.5 million occurrence, with a 10% survival rate.
Thankfully, with care from a collaboration of experts at the CHOC Heart Institute, neonatal intensive care unit (NICU), and the Fetal Care Center of Southern California, Damian is not only surviving — but growing.
“We have every reason to be optimistic that he will do fine in the short and long term,” says Dr. Amir Ashrafi, CHOC neonatologist, one of Damian’s team.
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Maternal-fetal care gives hope, preparedness
Damian is Ashley’s first child. She was nine weeks pregnant when she experienced heavy bleeding. She was whisked to an ER and stayed overnight. Doctors first told her they could detect no heartbeat in her fetus. Hours later, they said they heard one.
At 19 weeks pregnant, Ashley was referred to Dr. Jennifer Jolley, a maternal-fetal specialist at the Fetal Care Center of Southern California, a partnership between UCI Health and CHOC.
She diagnosed the fetus’ condition as Pentalogy of Cantrell, a version of ectopia cordis that is a collection of five congenital birth anomalies of the diaphragm, abdominal wall, pericardium, heart, and sternum.
“Dr. Jolley gave me the hope I was looking for,” Ashley says. “She said, ‘Don’t worry, we’re going to take care of you, this baby is going to come out perfect.’”
An early start at 36 weeks
A team of CHOC neonatologists specializing in high-risk births was prepared when Damian was born at 36 weeks via Cesarean section.
“He didn’t require resuscitation, intubation, or intensive care,” Dr. Jolley says. “He started crying and did what newborn babies do. And his heart was beating outside of his chest.”
“It almost looked like it was beating inside the umbilical cord,” says Dr. Amir Ashrafi, an expert in neonatology and neonatal-cardiac physiology who is part of the team treating Damian.
“The path ahead has only been accomplished a couple of times that I know,” says pediatric cardiologist Dr. Wyman Lai of Damian’s medical journey thus far.
Drs. Ashrafi and Lai joined other CHOC physicians in deciding how to treat Damian after he was born.
Because his heart had little protection from injury, moving it into its proper place was imperative.
Pediatric Surgeons Dr. Mustafa Kabeer and Dr. Peter Yu encouraged the team that since a thin membrane was covering the exposed portion of Damian’s heart, waiting for him to grow strong enough for surgery was the best course of action.
“Sometimes, doing nothing is a hard thing to get [physicians] to agree to do,” says Dr. Lai.
Innovation gives hope
To protect Damian’s exposed heart, the CHOC team looked for innovative solutions. They fashioned a 3D-printed shell attached to Velcro straps that Damian could wear at home. He stayed in the NICU for four weeks and did well and was sent home without a surgical procedure—just the chest covering.
In the coming months, the CHOC team will perform Damian’s first surgery, which will involve structural cardiac repair in addition to putting the heart back inside his chest. Several more surgeries will follow as he ages.
“I think everyone is thrilled that he has a chance to do well,” Dr. Jolley says.
Ashley appreciates every doctor and nurse who is taking care of Damian. “Without them,” she says, “I wouldn’t have the strength I do to this every day. They’re all amazing.”
