Sindy Perez went into premature labor at 25 weeks. Her son, Jacob Jordan, weighed just 2 pounds when he was born and was brought immediately to the Neonatal Intensive Care Unit (NICU) at Yale New Haven Children’s Hospital (YNHCH). She didn’t know it yet, but although Jacob’s premature birth was unexpected, it would turn out that he was born in the right place at the right time.
Jacob’s lungs had not fully developed, and he needed support from a ventilator to give his body the critical oxygen it needed. Several days passed in the NICU with little improvement for Jacob.
“I cried—what else could I do?” says Perez. Then, NICU nurses noticed that Jacob was having more difficulty breathing and that his skin looked blue. The doctors raced to figure out what was happening. They discovered that Jacob had what’s called a patent ductus arteriosus (PDA), in which there is an extra blood vessel from his heart, which is supposed to close soon after birth—but doesn't.
Perez was in tears—her first two children had no issues at all, and now her youngest son was seriously ill. “I didn’t know what I could do or how I could help my baby,” says Perez. “It feels like your heart is breaking.”
What is patent ductus arteriosus?
Patent ductus arteriosus is a common congenital (meaning present at birth) heart defect. In the developing fetus, the vessel is normal. It’s called a ductus arteriosus, and it allows blood to flow directly from the heart to the aorta—the body’s main artery—without going through the lungs. But if the connection doesn’t close after birth, it is called a PDA (adding the word “patent,” which means "open"). It can let poorly oxygenated blood flow in the wrong direction—or worse, allow the lungs to take oxygen-rich blood from the body. Infants who are born premature or have congenital heart defects are at higher risk for PDAs. And while some small PDAs cause no symptoms and eventually close on their own, larger ones can require early intervention.
A vessel like this might be three to five millimeters in diameter. "So, it's pretty small, but in a small baby it can be a big problem," says Jeremy Asnes, MD, chief of pediatric cardiology for Yale Medicine and medical director of the Children’s Heart Center at YNHCH. Complications can include lung disease, inability to feed, abnormal brain development, and heart failure.
PDAs have traditionally been treated with surgery, which can have a significant impact on a small body, but Dr. Asnes sat down with Perez and discussed an alternative.
While surgery involves opening the chest to close the vessel with sutures or a clip, he proposed catheterization, which is done by making a small puncture in the skin and threading a thin tube, called a catheter, up to the heart through the veins in the body.
While catheterization has been the standard method of repair for PDAs in children, only recently have techniques and devices been developed to address the problem in small, premature babies. Jacob would be one of the first babies in Connecticut to undergo the procedure.
Using catheterization to treat Jacob's patent ductus arteriosus
After coordinating with a cardiac surgeon and Jacob’s neonatologist, Dr. Asnes outlined his plan to Perez. A team would gather in the pediatric catheterization laboratory. With an anesthesiologist managing pain control and sedation, Dr. Asnes would make a small puncture in Jacob’s leg and insert the catheter into the large vein, and thread it up through his heart, using X-ray cameras to watch their progress on a monitor.
Once there, they would locate the PDA and close off the hole using a cork-like device (typically made out of materials such as metal and extra thin GORE-TEX fabric), stopping blood from flowing back into his lungs. “There are no stitches or sutures, and no scarring,” Dr. Asnes says. Once the procedure was complete—and the puncture wound was covered with a small bandage—Jacob would be taken back to the NICU to recover. The device would remain in his heart permanently.
Sindy and Obdulio Jordan, her husband and Jacob’s father, sat in the waiting room while Dr. Asnes and his team performed the catheterization on their son. “The doctor said the procedure would take 45 minutes, but it felt like hours,” Perez says. Then, Dr. Asnes came out and told them everything went well. She saw Jacob as they wheeled him back to the NICU and he looked better. Her husband, who had been crying, started to smile.
“I saw my baby, and he was perfect again,” Perez says. “I felt I had a life again.” Jacob’s pallor gradually changed into the healthy pink glow she had remembered—it was the look her older children had at that age.
Some cardiologists would like to make catheterization the standard of care for more heart patients, both pediatric and adult. “It's not to say that the procedure is not without any trauma, but it's certainly a completely different realm,” Dr. Asnes says. “The babies we've treated with catheterization have all not really noticed the procedure, which is wonderful. The neonatologists tell us there is no change—other than a gradual improvement—once the ductus is closed.”
Jacob stayed in the NICU for four months to receive care for other issues. By five months he was home, and Perez was finally able to hold him for long periods of time, which she hadn’t been able to do in the NICU.
Jacob will continue to have more doctor visits than his siblings, Perez says. But his 6-month follow-up visit after his heart surgery was very different. “He smiled at the doctor. You can see big changes. His heart is good. He is more like a normal baby,” says Perez.