A Girl with Two Heart Conditions and the Doctor Who Saved Her

Imagine an active, healthy eight-year-old girl playing on the monkey bars. She does her usual graceful dismount, but instead of a happy victory dance, she cries out as she feels a pain in her chest that won’t go away. Thus began the journey that brought Lilah and her family to Children’s Heart Center and the renowned Barry A. Love, MD.

According to Amy Nehrke, Lilah’s mother, from the moment Lilah cried out in pain, she remained by her side, trying to calm her daughter’s fears, as well as her own, as she sought help.

Amy took Lilah to a local cardiologist in Florida where they lived at the time. He made the initial diagnosis of supraventricular tachycardia (SVT), a fast heartbeat that is a type of arrhythmia.  Lilah’s pain was her heart beating abnormally fast. An abnormal electrical circuit in her heart caused the SVT.

However, after a complete evaluation, that was not the only problem. Lilah’s heart also had a large hole between the upper chambers (the atria), a condition known as an atrial septal defect (ASD). If untreated, an ASD leads to irreversible heart and lung damage.

Lilah’s parents wanted only the best for their daughter as they faced their greatest fear and felt powerless to protect Lilah. The shocking news that Lilah had a congenital heart defect and arrhythmia drove “team Lilah” (her parents, brother, and her extended family and friends) into action to find the best doctor.

Amy called a dear friend who had successful heart surgery several years ago at Mount Sinai. Her surgeon connected the Nehrke family with Dr. Love of Children’s Heart Center who specializes in both arrhythmias and interventional cardiology. Dr. Love is one of only a very few pediatric cardiologists who can treat both SVT and an ASD using minimally invasive techniques, helping young patients like Lilah avoid open heart surgery.

Knowing this, Lilah’s family brought her to Children’s Heart Center at Mount Sinai in New York City for consultation with Dr. Love. Because of the complexity of Lilah’s condition, he decided that it was best to first treat the SVT, and then have Lilah come back for second procedure to treat the ASD. This plan was not a surprise to Lilah or her parents. Dr. Love had discussed this plan with them. He had also been in communication with Lilah’s cardiologist in Florida. Dr. Love was familiar with all of Lilah’s records and the images of her heart. All agreed that this would be the preferred plan.

During the first procedure, called an ablation, Dr. Love was able to navigate small wires from the veins at the top of Lilah’s leg to pinpoint and eliminate the abnormal electrical connection. The very next day Lilah was able to leave the hospital. She and her family spent the weekend visiting Lilah’s relieved grandparents in Long Island before returning to Florida.

With the ablation a success in treating the arrhythmia, Lilah’s heart no longer had the abnormally fast rhythm. Lilah was feeling better, but she still needed one more procedure to heal the hole in the upper chamber of her heart, the ASD.

Would this second procedure require open heart surgery? Not according to Dr. Love who assured Lilah’s family. He would be able to repair the hole with a second minimally invasive procedure.

“A 22 mm hole is considered fairly big in a young girl like Lilah. Many cardiologists would refer a child with this condition for open heart surgery,” said Love. “Instead, during the first procedure while Lilah was asleep under anesthesia, we had Dr. Shubhika Srivastava from our advanced imaging lab do a transesophageal echocardiogram (TEE).

“The TEE gives a clear view of the atrial septal defect, and Dr. Srivastava and I examined the images together. We saw there was enough tissue surrounding the hole that I could use a closure device to repair it.” This meant that Lilah would not need open heart surgery after all.

So three months later as planned, team Lilah returned to Children’s Heart Center.

Using catheterization, Dr. Love inserted a thin tube through one of Lilah’s veins to insert the closure device to heal Lilah’s ASD. No surgery required, which was a relief to all.

Today, living in Colorado, with Dr. Love’s approval, Lilah and her family enjoy their new outdoor life style. Amy, her mother, is happy to report that Lilah is doing just fine.

“Lilah is a light, amazing little kid. She doesn’t need to take any medication. Her heart is healed, all thanks to Dr. Love who still keeps in touch with us. He really cares. And while Lilah only vaguely recalls what she went through, she actually feels proud of herself.”