Nathaniel: Waiting for a New Heart During a Pandemic

June 9, 2020

The last time Nathaniel Solis was outside of Lurie Children’s, it was uncommon to see people in public wearing protective masks. “Social distancing” had yet to become part of our daily lexicon and a new virus later to be named COVID-19 received scant news coverage outside of Asia.

Nathaniel, who is 14 months old, has been an inpatient in the Regenstein Cardiac Care Unit since mid-February, waiting for a donor heart. Diagnosed with hypoplastic left heart syndrome during his mom Nicolle Carrasco’s final trimester of pregnancy, the left side of Nathaniel’s heart is underdeveloped. Without a series of three corrective surgeries early in life, it’s a diagnosis that is usually fatal. Even after undergoing the surgeries, often these individuals will require a heart transplant later in life.

“Having a hospitalized child who needs a new heart, especially during this pandemic, has been very difficult,” says Ivan Solis, Nathaniel’s dad. “Now only one parent can visit at a time, and we can’t even take him for ‘stroller rides’ like we could when he was first admitted. He has to stay in his room, and everyone has to wear a mask. But we feel very comfortable here and know that Lurie Children’s is a safe place for Nathaniel and for us.”

Lurie Children’s Heart Center includes the Division of Cardiology and the Division of Cardiovascular-Thoracic Surgery, and is ranked 2nd in the nation by U.S. News & World Report. Last year, the heart transplant team performed 34 life-saving surgeries.

Nathaniel was born at Prentice Women’s Hospital, and was immediately transported through a bridge that connects Prentice’s Neonatal Intensive Care Unit (NICU) with Lurie Children’s NICU for his first surgery. He was able to come home briefly between his first two surgeries, but after a subsequent checkup Nicolle and Ivan learned that despite the surgeries, Nathaniel’s best hope was for a heart transplant. He was admitted to the hospital immediately.

“When they said he needed a transplant we were shocked,” says Ivan. “We knew it might be a possibility someday, but not this soon. His doctors told us it could take between three and six months for a heart to become available. That was on February 13th, and it’s been a very long wait so far.”

Contributing to the wait time is Nathaniel’s small size. Up until now he has received liquid nutrition through a feeding tube. Now his care team is trying to transition him to eat solid food, which should help him grow faster. Currently Nathaniel is being treated with medications to improve his heart function in advance of the transplant.

Until recently, Ivan and Nicolle took turns staying with Nathaniel. Ivan recently had surgery for a broken foot, which has made it difficult for him to get around. Now Nicolle spends most days with Nathaniel, while Ivan stays as often as he can.

In April they celebrated Nathaniel’s first birthday with a “virtual” party where he could see relatives and friends on a video screen. “He laughed when he saw all those faces at the same time on the screen,” says Ivan.

Despite the challenges of having a baby in the hospital for months during a pandemic, Nicolle says their six months at Lurie Children’s has been a positive experience.

“Everybody tries to make you feel as comfortable as possible,” she says. “I feel really at home when I’m there. His team and the rest of the staff have been very helpful despite everything that’s going on outside of the hospital, and have been very patient and understanding of our situation.”

Adds Ivan, “Nathaniel’s doctors and nurses are the best of the best. They give us peace of mind while dealing with a complicated situation.”